Butterfly Wishes Network: Blog http://www.butterflywishesnetwork.co.uk/blog en-us (C) Butterfly Wishes Network team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) Mon, 21 Sep 2015 21:57:00 GMT Mon, 21 Sep 2015 21:57:00 GMT http://www.butterflywishesnetwork.co.uk/img/s9/v97/u624203825-o807823342-50.jpg Butterfly Wishes Network: Blog http://www.butterflywishesnetwork.co.uk/blog 120 111 Rob Mank Photography, Off Camera Flash Training http://www.butterflywishesnetwork.co.uk/blog/2015/9/rob-mank-photography-off-camera-flash-training Here at the Butterfly Wishes Network we are lucky enough to have loads of very talented photographers as part of our team. One in particular has given beyond measure this month by offering his services of training a group of 20 of our photographers in the art of off camera flash.

Rob of Rob Mank Photography offered he's services free of charge in order to raise money for our organisation, we were even luckier to have the wonderful Richard Wakefield come along & video the workshop for us which will be later used in a promo video.

These two photographers & all of our other volunteers give up their free time when needed to provide families of children with life shortening illnesses a set of images for free, providing life lasting memories.

We had great feedback from the workshop & will be looking to hopefully set them up on a regular basis up & down the country.

Here are a few behind the scenes images plus a few I got of the models in action.

Ann Aveyard Photography

Photo Credit - Ann Aveyard Photography

http://www.emwestwood.com Photo Credit - E M Westwood Photography

What our photographers said about the day

Thanks again for Thursday - I had a brilliant time - Bexboater Photography

Liz, thank you so much for organising yesterday, such a great day, loads of new ideas to work on and so lovely to meet everyone. Thanks again to Rob, for sharing his wisdom - Kitty Phillips Photography

Great day, thanks so much for organising and thanks to Rob for his patience, time and expertise! - Sally Slack Photography

Such an awesome day today with a great group of people!! I hope you all enjoyed today and got something out of it!! - Rob Mank Photography

Richard also done a great blog post about the day you can read that here

We would like to give special thanks to our main admin leaders Liz Wood & Samira Jones for all the time & effort they not only put in to keep our organisation afloat but for organising such a great workshop for our photographers. Also to our three lovely models for being so amazing & patient whilst a gaggle of photographers pointed their lenses in their faces ;)

Here's to the next meet up lovely Butterfly team, no subway run this time ;) 

Ashleigh

(Admin Member)

 

 

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) Butterfly Wishes Network butterfly wishes network lets make memories memories photographers photographers providing families with memories volunteer photographers http://www.butterflywishesnetwork.co.uk/blog/2015/9/rob-mank-photography-off-camera-flash-training Mon, 21 Sep 2015 20:06:05 GMT
Butterflywishes shoot - meet Frank and his family. http://www.butterflywishesnetwork.co.uk/blog/2014/11/butterflywishes-shoot---meet-frank-and-his-family Butterfly shoot taken by Carla Pyke from http://custardcreamphotography.com/

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) Butterfly Wishes Network photographers photographers providing families with memories volunteer photographers http://www.butterflywishesnetwork.co.uk/blog/2014/11/butterflywishes-shoot---meet-frank-and-his-family Mon, 10 Nov 2014 19:01:55 GMT
Arabella http://www.butterflywishesnetwork.co.uk/blog/2014/6/arabella Meet the gorgeous Arabella...

Arabella is Veronika & Mike's first born, at around 8 weeks old Mummy and Daddy started noticing Arabella making strange movements, at the time they were unaware that Arabella was poorly, the movements were later recognised as early infantile spasms. At the time the family were moving from Aberdeen to Edinburgh and they are very thankful to the staff at Edinburgh's Sick Children's  Hospital who provide the best care possible to Arabella.

 

It was there that the family learned that her condition called Ohtahara Syndrome which is a very rare, extremely severe form of epilepsy. Mummy and Daddy were told she most likely wouldn't even leave the hospital. Two years on she has defied everybody's expectations and continues to be a very happy little girl. She can't stand, sit unaided or even hold her own head, due to the seizures, it is unknown how much she can see and she has seizures that can vary from little eye-flickers to full body jerks, but a smile is never far from her lips!!

 

Arabella  vocalises a lot in her own little language which she now shares with her little brother Korben who was born earlier this year, she is clearly aware of the recent changes in the family, she listens to her brother's crying and "talks " to him if mummy and daddy  lay them next to one another they have a beautiful bond.  

We would like to say a big thank you to Rachael of Beautiful Bairns who captured this beautiful family.

 

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) http://www.butterflywishesnetwork.co.uk/blog/2014/6/arabella Sun, 08 Jun 2014 18:34:30 GMT
Noah http://www.butterflywishesnetwork.co.uk/blog/2014/6/noah Meet Noah

Noah is 2 years old and full of personality and love as you can see from his images, at just 8 months old his liver started to fail and his family were told it was enlarged, at the same time the Doctors discovered that his spleen also was enlarged.   To date Noah's medical team are working hard to diagnose his condition.

Noah is a lovely little boy some doctors have mentioned that he may be Autistic as he often finds it hard to express himself.

Noah and his brothers are Mummy and Daddy's little men! 

A big thank you to Kati of www.pikturethatfotografy.co.uk for capturing these gorgeous photo's of Noah and his family.

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) http://www.butterflywishesnetwork.co.uk/blog/2014/6/noah Fri, 06 Jun 2014 18:00:00 GMT
Lucas http://www.butterflywishesnetwork.co.uk/blog/2014/6/lucas Meet Lucas

little soldier Lucas is 8yrs 8mths old. At 5 months old he was diagnosed with a rare genetic brain disorder called Lissencephaly (which means 'smooth brain'), and Microcephaly. His mummy was told at that time that it was life limiting and very unlikely that he would live past 2/3 years of age.

His condition means he suffers with seizures everyday and night, and he is severely disabled and unable to walk or talk and is totally reliant on his amazing mummy. He suffers with repeated chest infections which make him very poorly.  Yet through all of this mummy's little man has shown such strength and willpower and against the odds he is still here with his family, he goes to school when he is well enough, and he is the absolute light of his mummy's life. Although non verbal his facial expressions leave you in no doubt of his mood. He rarely smiles but when he does it makes his mummy's heart sing!

Special thanks to our photography Liz who captured Lucas and his mummy on their recent photoshoot.

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) http://www.butterflywishesnetwork.co.uk/blog/2014/6/lucas Thu, 05 Jun 2014 18:00:00 GMT
Olivia's Story http://www.butterflywishesnetwork.co.uk/blog/2014/3/olivias-story Meet Olivia...

Olivia Alice Walker was just aged 15 when she passed away on the 13th of February 2014.

Olivia was born with complex needs and was undiagnosed.

 

Her Mother kindly wrote a few words for the Butterfly Wishes Network and is happy for us to blog her pictures in memory of her daughter.

"She was a very happy child and nothing phased her including all the operations she had.she had an infectious smile and just enjoyed other peoples company and just loved being with her family. She enjoyed going out and loved being on her trike which was specially adapted for her wheelchair. She will be sadly missed by everyone who knew her especially her smile xxx"

Our photographer, Kati, added

"Olivia was the first child I have photographed for BWN. What an amazing young lady! She was immensely cheerful during the entire photo shoot and a pleasure to work with.

It was quite a humbling experience for me. Even though I have worked as an intensive care nurse for 18 years, my experience is solely based on adults as well as in hospital surroundings. Visiting Olivia at her home was a very exciting opportunity. Her parents Kim and Barry were so warm and welcoming, I really enjoyed being a guest in their house. What a loving family!

Although having met her only once, I was very sad to hear that Olivia has passed away. I cannot even begin to imagine what her parents must be going through. It is just heart-breaking and life doesn’t seem to be fair. However, it also highlighted to me what an important role the Butterfly Wishes Network plays. It may not seem much, but I feel I have contributed for Kim and Barry to preserve the memory of their daughter, images of happy times they can cherish for many years to come."

Kati Fichtelmann can be found at Pikture That Fotografy or on Facebook and the team at Butterfly Wishes Network would like to say thank you to her for her gift to this family.

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) Butterfly Wishes Network Kati Fichtelmann Pikture That Fotografy Professional Photographer Undiagnosed Condition lets make memories memories photographers photographers providing families with memories volunteer photographers http://www.butterflywishesnetwork.co.uk/blog/2014/3/olivias-story Thu, 20 Mar 2014 13:51:45 GMT
Jonah's Story http://www.butterflywishesnetwork.co.uk/blog/2014/3/jonahs-story Meet Jonah

Jonah is five years old when he was just two he started his treatment for a type of cancer called Acute Lymphoblastic Leukaemia. Over the years he has gone through Intravenous chemotherapy, chemotherapy into his spine, oral chemotherapy, oral steroids, blood transfusions, platelet transfusions, multiple antibiotics both orally and IV.

Jonah receives his daily cocktails of medications, and on days that he is feeling strong enough he really enjoys going to school and spending time with his friends. More typically, he is at home. On those days he needs lots of rest and to have his legs kept warm as they get very painful and he has muscle wastage. He likes to lie on the sofa and play lego, read books about superheroes, and watch DVD's about his favourite heroes.

His favourite games are:

Lego
Superhero movies
Comic books
Playstation games
Skylanders

Fortunately for Jonah and his family, his treatment has been successful and he is coming to the end of it all. His Mum says "It would be the perfect gift for us all to celebrate the winding down of a relentless and punishing chemotherapy schedule over the last 3 years. It would be something we could treasure and it would be such a treat to have photos of Jonah looking relatively well."

Thank you to Jennifer Peel Photography for taking Jonah's family photos on behalf of the Butterfly Wishes Network. You can visit her Facebook page as well and show her a Like from us.

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) ALL Acute Lymphoblastic Leukaemia Butterfly Wishes Network cancer http://www.butterflywishesnetwork.co.uk/blog/2014/3/jonahs-story Fri, 14 Mar 2014 17:32:21 GMT
A BIG thank you to the Newborn Photography Show http://www.butterflywishesnetwork.co.uk/blog/2014/2/a-big-thank-you-to-the-newborn-photography-show
The Butterfly Wishes Network is so pleased to announce that we will be attending the Newborn Photography Show which is being held at the beautiful Birmingham Botanical Gardens in May 2014! 

We cannot thank the show enough for their generosity providing us with a stand to spread the word about Butterfly Wishes and also donating an amazing £500 to the organisation!

So if you are free on the 27th or 28th May 2014, please come and visit us! We will be there to answer any questions and hopefully gain many more photographers to our rapidly growing network willing to give their time for free to make memories for families of children with life shortening conditions. 


The Newborn Photography Show is the 1st of its kind in the UK and it is dedicated to Newborn Photography. 

With a host of excellent trade stands, this is a great opportunity not only to see and buy props in the flesh, but also to learn from some top names such as ROBIN LONG, GARY HILL, MARKO NURMINEN, LISA BEANEY JAMES CARTER and CHARLIE KAUFMAN! 

There will also be a variety of classes and chargeable masterclasses. Learn the art of newborn lighting, learn effective SEO techniques, learn how to post process your newborn images beautifully, and watch a live newborn shoot. 

Top US newborn photographer ROBIN LONG is flying to the UK to attend the show, and she will be teaching chargeable masterclasses on both days. 

If you are a newborn photographer or interested in becoming one, be sure to register for tickets and come and say Hello to us too! 



 


 

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) Butterfly Wishes Network butterfly wishes network charity donation lets make memories memories newborn photographers photographers providing families with memories photography show trade volunteer photographers http://www.butterflywishesnetwork.co.uk/blog/2014/2/a-big-thank-you-to-the-newborn-photography-show Sat, 15 Feb 2014 19:39:14 GMT
James' Story http://www.butterflywishesnetwork.co.uk/blog/2014/2/jamesstory James was diagnosed with a rare severe congenital heart defect in pregnancy. He has PA-VSD, ASD and CAF. (Pulmonary atresia, ventricular septal defect, atrial septal defect and just recently coronary arterial fistular.

James spent over 2 months of his short life in hospital fighting his battle and had emergency open heart surgery followed by other surgeries. James is on a palliative care pathway and takes medication daily to prevent his heart failing.

James has a beautiful big sister who has been amazing through everything we have been through as a family.

A massive thank you to Jess Petrie from http://jesspetrie.com/ for the beautiful photographs.

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) Butterfly Network Pulmonary Wishes atresia atrial butterfly defect families lets make memories network photographers providing septal ventricular volunteer wishes with http://www.butterflywishesnetwork.co.uk/blog/2014/2/jamesstory Fri, 07 Feb 2014 09:56:49 GMT
Ruby-Mo http://www.butterflywishesnetwork.co.uk/blog/2014/1/ruby-mo Meet Ruby Mo

Ruby Mo is three years old

She has a rare chromosomal abnormality, global development delay and chronic lung disease. She was first diagnosed at just 5 months old.

Her Mum says, "Every day is different with Ruby. I do a lot of physio, oxygen therapy taught at the advance centre, she enjoys her standing frame, she attends music therapy, nursery and conductive education. We like going for walks.

Ruby has been on oxygen for 2 years and recently she has come off it so for us and our family to have pictures of Ruby without tubes is absolutely amazing and a huge achievement for her as she has had an extremely tough start with over 30 hospital admissions and 4 serious intensive care admissions too."

A massive thank you to Ian Marriot-Smith from www.marriottsmithphotogaphy.com for the beautiful photographs.

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) http://www.butterflywishesnetwork.co.uk/blog/2014/1/ruby-mo Wed, 29 Jan 2014 12:25:57 GMT
Mikey's Story http://www.butterflywishesnetwork.co.uk/blog/2013/11/mikeys-story This is Mikey, he was diagnosed at 7 years old with Pilocytic astrocytoma (brain tumour) Hydrocephalus & Forth nerve palsy. Mikey's Mum tells us his story:

So far he has had a de-bulk of tumour in December 2011, Shunt fitted in April 2012, Chemotherapy on going since November 2012

Mikey’s long term prognosis is unknown. His brain tumour is inoperable, therefore he will never be in remission from cancer, and also suffers from hydrocephalus (fluid on the brain), which is treated by a vp shunt, which is a life threatening condition also.

 

Mikey loves football, he would play it morning noon and night if he could! He enjoys making people smile, and loves to sing.Mikey suffers sickness in the mornings, but then on a good day with hardly any symptoms, he usually mananges a full day at school, coming home very tired and resting.

On a day with treatment mikey spends all day in hospital on chemotherapy. He also has days when problems with his shunt, keep him at home feeling very unwell.  No two days are never the same for Mikey. Unfortunately life is very unpredictable.

 

 

It means being given a chance to capture happy moments that are so far and few between, they sometimes get forgotten.  Having photos taken of us as a family, when Mikey is poorly and going through so much, will be a way of being able to remember positive and happy moments for us as a family, at a time when things often seem grey.  It will be a fantastic way for us both and our children to look back and remember just how beautiful life is when we are together.

Special thanks to Hannah of Casey Avenue Photography for taking these photographs for Mikey & his Family. Facebook.com/CaseyAvenuePhotography

You can follow Mikey's journey on Facebook: Mikey's War

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) Butterfly Wishes Network Forth nerve palsy Hydrocephalus Mikey's War Pilocytic astrocytoma brain tumour butterfly wishes network children with life limiting illness lets make memories photographers providing families with memories volunteer photographers volunteer photography http://www.butterflywishesnetwork.co.uk/blog/2013/11/mikeys-story Fri, 01 Nov 2013 22:14:55 GMT
Santi's Story http://www.butterflywishesnetwork.co.uk/blog/2013/10/santis-story This is Santi, he was diagnosed with Pallister Killian syndrome at just 3 months old.

Santi has undergone corrective surgery for undescended testis and strangulated hernias as well as various hospital admissions for chest infections including ventilation on life support.

Music and singing, lights, hydro pool, cuddles and kisses are his favourite past times. Santi loves Woody and Buzz from Toy Story. Woody is his favourite talking buddy doll. Santi loves swimming and the sensory room.

Santi's Mum tell us these photographs are "such a magical gift. Always feel sad going past photographers studio knowing they cant meet our needs due to our sons limited mobility."

Thank you so much to Daniela of Ferri Photography (Facebook) for providing Santi & his family with these images to treasure.

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) Butterfly Wishes Network Pallister Killian syndrome butterfly wishes network lets make memories photographers providing families with memories volunteer photographers http://www.butterflywishesnetwork.co.uk/blog/2013/10/santis-story Thu, 24 Oct 2013 16:08:03 GMT
Jacob's Story http://www.butterflywishesnetwork.co.uk/blog/2013/10/jacobs-story Meet Jacob, a beautiful little boy. Jacob's Mum tells his story...

"Jacob has a very rare condition known as Gm1 Gangliosidosis, type 1. It is the most debilitating form of the degenerative condition and results from genetic coding not allowing for production of beta-galactosidase enzyme essential for neurological functioning. As time goes by, the organs in the body start to fail."

"Jacob was only diagnosed on the 21st of august, he is currently on epilepsy medications to control his fits. There is no treatment or cure for Jacob. His life expectancy is 2 years. He is 16 months."

"Jacob loves spending time with his parents, going to different activities. He also loves spending time in his own sensory corner that his mummy built for him at home. Jacob needs to be kept confortable, so he does spend his day cuddling with his mummy, going for walk in his buggy. His favourite thing is his sensory bubble light."

"It does mean the world to us having these photographs as it is a lasting memory of 3 of us together"

Huge thanks to our approved photographer Leandri Perry Photography for taking such beautiful images. www.facebook.com/leandri.perry

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) Butterfly Wishes Network Gm1 Gangliosidosis butterfly wishes network children with life limiting illness lets make memories photographers providing families with memories volunteer photographers volunteer photography http://www.butterflywishesnetwork.co.uk/blog/2013/10/jacobs-story Wed, 02 Oct 2013 18:06:58 GMT
Ella's Story http://www.butterflywishesnetwork.co.uk/blog/2013/9/ellas-story Meet Ella...

Ella and and her little sister, Chloe, were diagnosed with Cockayne Syndrome in December 2012. Cockayne Syndrome or CS is a premature ageing syndrome where the DNA can’t repair itself which leads to a shortened life expectancy (average 12) Ella is 6 and Chloe is nearly 5 months old. They also have a brother called Alex who is not affected but may still be a carrier. Ella can’t walk unaided, has few words and learning disabilities, over time she will lose skills as it is a degenerative condition. So far apart from suffering with reflux Chloe is a healthy baby.

 

Butterfly Wishes NetworkButterfly Ella

Ella has been testing on all her life, blood tests, MRI scans EEGs which have never come back showing what the syndrome was, it wasn’t until we were asked by the geneticist about her sun light sensitivity that she was tested for CS. She has had an operation on her feet to straighten them and is about to be on medication to help with her tremor and drooling unfortunately at this time there is no treatment for the condition. She will most probably lose her hearing and sight as her body shuts down maybe getting diabetes. Her immune system is quite low so she can catch every cold/bug going and unfortunately one day that may be the cause of her death.

Ella loves her babies; takes them everywhere with her, she loves being round people she is very sociable and is so happy all the time everyone comments on her smile wherever we go. She Loves going to school during the week (she goes to a special school Southview in Witham) unfortunately she gets too tired to do any sort of club or activity in the evening so we can be quite limited to what she can do also at the weekends as if we do too much she becomes ill.

Thank you it has been an amazing opportunity to get their photos done at this stage of their lives as we have no idea how long she has left and as yet CS hasn’t taken over her too much so it was so nice to get the pictures done while they are both well and still very haopy thank you so much 

Thank you to Sally Slack from www.sallyslack.com / www.facebook.com/sallyslackphotography for the beautiful images.

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) http://www.butterflywishesnetwork.co.uk/blog/2013/9/ellas-story Mon, 23 Sep 2013 16:54:55 GMT
Travis' Story http://www.butterflywishesnetwork.co.uk/blog/2013/9/travis-story Meet Travis...

"Travis has a neuro-muscular disorder called Spinal Muscular Atrophy Type 1. It affects the motor neurons in his spinal cord which means he is unable to move any of his muscles freely. It affects every muscle in his body - It affects his chest muscles, so he is unable to breathe easily. It also affects his ability to cough and swallow making it difficult for him to manage secretions. This makes his respiratory system very fragile and also makes him very susceptible to chest infections.

From birth it was clear Travis had problems. Testing for infection started from when he was born as he was taken straight to a special care baby unit. At 2 weeks old, when all infection tests came back negative and he was not improving, genetic testing was started. Genetics took 3 weeks to come back and Travis was officially diagnosed at 5 weeks old.   

Travis is receiving palliative care, our main aim is to make him as comfortable as possible as there is no cure for his condition.

Travis has nightly BiPap and oxygen when required. He also has medication to help with managing secretions and medication for pain relief. He has regular antibiotics to fight off possible chest infections. Travis can suffer with anxiety, due to the fact he has to work so hard to breathe, and can sometimes feel he cannot breathe properly, so he also receives a mild sedative that helps to relax him when he is experiencing anxiety.   

Travis’ consultant has advised they believe his long term prognosis to be 6–8 months old. As he gets older and grows, his muscles will deteriorate and his respiratory system will not be able to sustain itself. There is also the worry of infection and illness throughout the winter months.

Although Travis cannot move himself, he is a little boy and prefers nothing than you giving him a hand to ‘bosh’ his toys around! He loves sensory toys, and has a sensory den at home with fibre optics and a bubble tube. He also loves being out in the fresh air, watching the trees overhead as we push him in his pram. 

Travis favourite thing to do is just to play. He loves listening to stories, and his face lights up when you play peek-a-boo and do silly things with him.

The photographs we had thanks to The Butterfly Network are much more than just photographs. They are memories we will cherish forever and something we will always treasure. Every single day we have with Travis is extremely precious; to be able to have beautiful photographs together as a family mean the world to us. They show us together as a family and show the love we all have for one another.

A massive thank you to Lorna from http://photographybylorna.co.uk/ and  https://www.facebook.com/Photography.By.Lorna?ref= for the beautiful images.

For more information and to follow Travis' story, please visit his Facebook page at https://www.facebook.com/TravisKeseru  

 

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) http://www.butterflywishesnetwork.co.uk/blog/2013/9/travis-story Mon, 02 Sep 2013 11:34:56 GMT
Rhea's Story http://www.butterflywishesnetwork.co.uk/blog/2013/8/rheas-story Meet Rhea...

Rhea's Mum tells her story

"Rhea has very severe Cerebral Palsy which was caused by her brain failing to develop properly when I was pregnant with her. Her brain damage means that she suffers from: global developmental delay (she cannot hold her head, sit or walk), epilepsy, is blind, non-verbal, has scoliosis, kidney damage, weak bones that are prone to fracturing, she is tube fed, and she also has to be ventilated at night because she has a problem with her airway. Rhea also has no speech, so that means I am her voice . Rhea is Life Limited and not expected to reach adulthood so she is under the care of a children's hospice. But inspire of all these medical problems, Rhea still finds plenty of time to be cute, cheeky, cuddly and utterly adorable!  

 

It was apparent to me from birth that there was something wrong with Rhea, but it was not until she had her first seizure at the age of just 8 weeks of age that I was taken seriously. Rhea was admitted to hospital and a week later we were given the news that her brain was under developed.  

Rhea had 3 major operations between the ages of 2 and 3 years of age. She had major brain surgery in the form of a Left Functional Hemispherectomy to try and help her seizures, she then went on to develop Hydrocephalus and needed to have a second brain operation in which a VP shunt was inserted into her brain. Rhea's third operation was to insert a gastrostomy (feeding tube) and a Nissens Fundoplication to help her Reflux. As well as these three complicated procedures, Rhea has had many other hospital admissions in her lifetime. Rhea has been on the Ketogenic Diet since 2006 to try and help her Epilepsy, but sadly the diet does not seem to be controlling her seizures as well as it used to. Rhea also fractured her leg in October 1012, so she has 6 monthly infusions in hospital to help strengthen her bones.  

Rhea is Life Limited and not expected to reach adulthood, but since developing the problem with her airway last year (for which she needs ventilating at night) she is now also known as being Life Threatened, which means that as well as being life limited, she will have episodes in her life when her life is at risk. It absolutely breaks my heart that my gorgeous little girl will never be a lady, and to be perfectly honest, a vast amount of her childhood has been robbed by her brain damage.

Well inspite of Rhea being so poorly she is an absolute joy to be around. It takes a long time to even begin to understand Rhea and to gain access into "Rhea's World", but when you do get to this stage, there is actually an awful lot of fun things you can do with her. She loves a massage (especially her head, legs and feet), she loves being tickled (but only mummy knows the closely guarded secret of which part of Rhea's body that she likes being tickled the most!). Rhea has the most beautiful nails so we often give her manicures and pedicures. She likes going for walks, absolutely loves having a lie in in the morning, and really enjoys having cuddles in mummy's lap. We focus a lot on music with Rhea, because with her being blind she cannot enjoy some of the things that children with sight can enjoy, so Rhea has a very big collection of CD's including many from around the world, and she has weekly Music Therapy Sessions too. Her favourite musical instrument is the bells. We try and take Rhea to the theatre every now and then, and she has seen various shows including Charlie & Lola, Peppa Pig and Ben & Holly. Her best friend really has to be her little cousin Selina.  

It means everything to us to have some lovely photos taken. I love taking photos of Rhea, but because I am usually the other side of the lens I don't have many nice photos of me and Rhea together. Nothing is more precious than photos and professionally taken ones are just priceless. Sadly, one day, I will lose Rhea, and all I will have are photos of her to keep her memory alive. Our photo shoot with Ali went so well. She was so patient and so caring, and thanks to her giving up her time and all her hard work, I have some beautiful photos of my little princess."

Ali, one of Butterflies' founders and administrators, was very honoured to have take the shoot. "This family warms my heart. Purabi, the mother, has a massive heart of gold and it was such a joy to do this for them. Rhea is a treasure and it was so lovely to hear her grind her teeth because she was enjoying herself out in the lavender. It was an emotional shoot for me, just because of the love this family has. Thank you guys for letting me be a part of your lives even for just one afternoon." 

Ali is from: http://www.alipoultonphotography.com/  and www.fb.com/alipoultonphotography

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) Butterfly Wishes Network Cerebral Palsy butterfly wishes network lets make memories photographers providing families with memories volunteer photographers http://www.butterflywishesnetwork.co.uk/blog/2013/8/rheas-story Wed, 28 Aug 2013 12:50:52 GMT
Kaddeisha's Story http://www.butterflywishesnetwork.co.uk/blog/2013/8/kaddeishas-story Meet Kaddeisha 

Kaddeisha has CROMO 9 and 16 abnormalities and is blind, has hearing impairment, brain abnormalities, global development delay, seizures and and a tracheostomy.

Kaddeisha's Mummy says, "At my 20 week scan, they could not see any kidneys, I was sent to Kings College Hospital where they diagnosed Potters Syndrome which is not compatible with life and offered several terminations but we just said, "We are not God, we do not make life, so we should not take a life". We were then told Kaddeisha would be stillborn or die seconds after birth as low amniotic fluid meant lungs would not develop and obviously no kidney.

When Kaddeisha was born, we were left to spend quality time with her as they thought she was going to die however after several hours she was becoming more pink and decision was made to send her from local hospital to London for testing. They found she did have one kidney but very small so creatine levels were extremely high they said poor outcome and also she had four holes in her heart. Also cleft palette which is still not repaired.

Kaddeisha was a fighter, came home, and was doing well but at 7 weeks she got a chest infection was rushed to intensive care. She recovered, however, weeks later stopped breathing whilst in hospital with another bad chest and was rushed to London intensive care. They found that she had hole in her bowel and ecoli. We were close to losing her again and that Christmas Eve she had half her bowel removed and another 3 months hospital. Whilst in hospital she started having seizures; the MRI showed severe brain abnormalities which explained the seizures and development delay.

Kaddeisha was the registered blind and giving her first little hearing aids. She was in and out hospital all the time for the first 2 years. We practically lived there. In November 2011 Kaddeisha was given a tracheostomy to stop the need for ventilation so much and they found she had severe tracheomalacia and broncomalacia. 

Kaddeisha loves her big brother because he is very noisy lol she also loves vibrating toys and singing songs. Favourite has to be her time in her sensory tent. She loves her disco ball, vibrating pillow and chimes.

Kaddeisha spends lots of time with her loving family, we do daily physio through play and lots of stimulation for her such as play in her sensory tent. She has daily meds and she needs regular suctioning. Kaddeisha does not take anything orally it is all through a gastrostomy which is a tube in her tummy. We have a nurse in 4 nights a week to help with care as Kaddeisha needs someone with her 24/7 because of the tracheostomy. Kaddeisha is such a very happy little girl, today is her 4th birthday, never thought my little girl would be 4 and starting school this September so so proud my little fighter".

Thank you to Julia Hope from http://www.julialouisehopephotography.com/  https://www.facebook.com/Juxhope for the beautiful pictures and to Kaddeisha's family for sharing her story. 

 

 

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) http://www.butterflywishesnetwork.co.uk/blog/2013/8/kaddeishas-story Thu, 22 Aug 2013 09:56:24 GMT
Brett's Story http://www.butterflywishesnetwork.co.uk/blog/2013/8/bretts-story Meet 6yr old Brett!

 

My gorgeous little boy Brett is the apple of my eye!

Brett has many medical interventions that have to be dealt with on a daily basis, including a gastrostomy feeding tube and a permanent colostomy bag, but he never fails to amaze me with his light up smiles and infectious giggles.

 

Since he was born in January 2007 he has undergone major operations including open heart surgery and bowel/stomach surgery as well as many minor surgeries too....

He's given me more than a few scares in his 6 years (time on life support when he stopped breathing, a blood clot in his heart, to name just a a few of the worrying times...) and he is a reminder of how fragile and precious life is, it's always about making the most of the times when Brett is well and trying to cram in as much fun and learning when he has his good spells.

 

Brett lives with me (mum) and his older brother Garry, he also has 2 older sisters who have flown the nest and family who love him very very much. He goes to special school and uses a wheelchair, and he has wonderful teachers and a physiotherapist who are working very hard to teach him his sitting balance - at the moment he can sit with support around his waist or in a special berilo chair.

Brett is a real people person and loves to interact with adults and children alike, and also loves his toys and DVD time. He goes swimming each week at school, and loves the feel of splashing in the warm water.

Probably the hardest part of coping with life as it is now is that Brett can't talk and tell me how he feels or what he's thinking, and not knowing what the future holds for him (he has a bowel condition that is always at risk of flaring up and can become critical very quickly) but the key is to enjoy the times when Brett's well and to never look too far ahead.

He's my very special boy and teaches us all so much about the important stuff in life. Love him to the moon and back....

Thanks to Butterfly photographer and administrator Maxine from https://www.facebook.com/pages/Maxine-Sarah-Photography/365593203458156 / http://maxinesarahphotography.com/ for the gorgeous memories.

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) http://www.butterflywishesnetwork.co.uk/blog/2013/8/bretts-story Mon, 19 Aug 2013 07:32:04 GMT
Kian's Story http://www.butterflywishesnetwork.co.uk/blog/2013/8/kians-story This is Kian. He is 12 years old and has a germ cell brain tumour. Since finding out, he has had 2 major brain surgeries, 3 months of chemotherapy and 7 weeks of intense radiotherapy. The prognosis is very good and he has a very strong chance of being cured.

Kian loves playing football, going out with friends and going to watch Shrewsbury Town play. He also supports Tottenham Hotspur. He enjoys playing on his Xbox - Call of Duty and Fifa being his favourite games. He also enjoys listening to his iPod.

 

A typical day would be school, which he has manage to attend as much as possible throughout all his treatment, come home and go straight out with friends, there are days where he is too tired to go out and he will stay home but he tries his best to carry on as much as possible with life as much as he did before being diagnosed.

We have been through a really tough year and we have managed to get through it as a family. Having photos of us all as a family will show and remind us how close and happy we still all are after everything and give us something to look at. Hopefully it will show how much stronger we are as a family and to show Kian how far he has come in the past 10 months.

Thank you to Paul Jones from www.facebook.com/pauljonesphoto / www.pauljonesphoto.co.uk who added "I guess in common with most photographers getting involved with families such as this it is quite humbling. To see how an ordinary family have faced unimaginable stress in the face of life threatening illness and come out the other side is inspiring to say the least. Kian is such a matter of fact lad I can't believe how well he has coped and thank goodness things now seem to be looking more positive."

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) http://www.butterflywishesnetwork.co.uk/blog/2013/8/kians-story Sun, 11 Aug 2013 09:39:42 GMT
Isabel's Story http://www.butterflywishesnetwork.co.uk/blog/2013/8/isabels-story  

Isabel was only 4 weeks old when we got the awful news that she had Cystic Fibrosis.
 
 
 

 

Cystic Fibrosis causes her to have a build up of thick mucus in her lungs which she is unable to discard herself, unlike any person without CF. CF also affects the pancreas, which means hers isn’t able to break food down and digest her food properly.

 

Isabel has to have regular visits to hospital, at the moment it is roughly every 4-5 wks. In these visits they weigh her and check around her stomach and listen to her chest (front and back). They also take cough swabs to check for infections and do her oxygen levels. We talk to Isabel’s dietician about the food she eats and the amount of creon needed before each feed. As well as hospital visits, Isabel has to have physio twice a day, this helps/prevent the build up of thick mucus that she can't move. She also has to have antibiotics twice a day and two lots of vitamins once a day. Also before each feed she has to have some creon which varies in the amount as to what she is eating as creon acts as her enzymes which helps break her food down.

 

 

 

She loves playing chasing games with her brother - lots of giggles from her while doing this her toy phone goes all over with her. She also likes playing with some wooden stacking shapes which belong to her brother.

 

Isabel also loves playing with our pet dog, and follows him round everywhere shouting his name (jack), which has also made her fascinated with character dogs on programs especially Wags the dog on the Wiggles.

 

 

Thanks to Christy Bailey at https://www.facebook.com/CBaileyPhotography for the beautiful images.

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team@butterflywishesnetwork.co.uk (Butterfly Wishes Network) http://www.butterflywishesnetwork.co.uk/blog/2013/8/isabels-story Sat, 10 Aug 2013 14:16:03 GMT