Butterfly Wishes Network | Rhea's Story

Rhea's Story

August 28, 2013  •  1 Comment

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


June Casey(non-registered)
Absolutely beautiful - the whole thing, words and pictures. Photography is a wonderful gift and it is good that you can share it in this way. x
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