Our promise to Raphael

My name is Raphael and I am 14 years old. I was born at 24 weeks so I wasn't ready and this caused me to bleed in my brain and nearly die. My mum couldn't cuddle me for two weeks and even then I was too weak to be out of my incubator for very long. 

I spent the first six months of my life in intensive care, my mum and dad were told twice in my first week to prepare for my funeral as I wasn't expected to live and that even if I did I would have severe brain damage.

It was on these two occasions they sat and held my hand, watching me fight for my life in my incubator and praying for me to pull through, that

they promised me that if I made it through they would do everything they possibly could to give me the best life I could hope for. 

I fought so hard and now my Mum and Dad are asking you to help them make my fight worthwhile  by helping them raise some money to enable me to receive special equipment to give me the best chance of reaching my full potential and achieving my dream of eventually being independent.

The bleed left me with severe cerebral palsy which means my muscles don't do what I want them to do and the harder I try the harder it is for me. Just because my muscles don't work doesn't mean I do not understand, I understand when people talk to me and giggle and laugh just like any other teenager.  I cannot do what other teenagers do but inside am like every other teenager and love listening to music, swimming and horseriding, and I love playing on computers with my eyegaze technology. This is also the way I communicate and undertake my education, and how I control most aspects of my life. I can use the TV, read, play music and control my bedroom lights this way. I am also currently learning to DJ using eyegaze.!

During my time in hospital I had many painful procedures without any pain relief, including repeated lumbar punctures to release pressure on my brain. I had brain surgery at two weeks old to prevent my brain from swelling and the brain damage from becoming worse. I had daily apnoeas where I would stop breathing and had to have emergency resuscitation. My mum had to pump breast milk for me and feed me through a tube as I couldn't cope with breathing and swallowing together. I also suffered a broken hip which was unrecognised and left me in severe pain for weeks, this has left me with lasting problems in one leg as I can no longer straighten it and it is now much shorter then the other which affects my ability to use my walker. This will mean more painful surgery in the future.

My life consists of regular appointments to doctors and therapists, and daily therapy and exercises which can sometimes be painful. My life can also be a little restricted because mum and Dad find it hard taking me out as much as Id like now I am bigger and my wheelchair is not easy to access everywhere,

There are therapies and equipment available that would assist me to develop much further, improving my mobility, quality of life and increase my chance of independence whilst also having fun. 

Update 2023.

Thanks to all your generous donations we have been able to continuously use the funds to enable Raphael to make progress through his ongoing therapies and we are delighted to say he has also become a competent eyegaze user  (see below). We need funds to enable Raphael to continue to benefit from therapies, at least throughout his teenage years when they are most important.  However imminently wish to obtain the following equipment for him to increase his independence now he has become a teenager. We have also outlined how therapies have helped  him develop over the years.

Our hopes:

Eyegaze controller for Powered wheelchair 

The most imminent wish for me is to have independent movement. I have a powered wheelchair which I have never been able to use myself due to having no controlled movement in my arms. This means I am always dependent on others for movement. However I am able to use eyegaze technology and there is now a system available called 'AbleDrive' to enable eyegaze control of a powerchair. Eyegaze is my only method of any independence due to the severity of my disability,. Acquiring this system would give me so much more independence as I would be able to move myself around whenever and however I want instead of being stuck in the same place or relying on others to move me around. It would also enable me to 'dance to music', something I would really love to do. Eyegaze technology has opened so many doors for me and allowed me independence in so many other ways, being able to control my own movement would be the icing on the cake.

This equipment costs £7000.

Hydrotherapy which is the only opportunity I have to relax my muscles as the warmth and bouyancy decrease the painful spasms I live with every day. It also builds strength in my limbs and improves my balance and coordination.

£15 pays for a half hour use of the pool with a trained physio.

 Horseriding is one of the best activities to help balance and coordination of muscles and to develop strength and control in the core.  It is also one of the only ways to prevent hip dislocation, very common in cerebral palsy and a major reason for needing extensive surgery.  Regular horseriding has worked to prevent problems with my hip development.  I love riding as it is one of the only times I get to experience movement like walking and running. We need help for me to be able to continue this. Due to needing specialist horses and assistance this costs £55 a session. 

Anat Baniel Method/Feldenkrais  - this therapy aims to work with the natural development of a child's brain, maximising the brains potential to heal itself and so giving me the best chance of normal development. It enables me to learn to recognise and control my painful spasms and incorrect movements which can impact on my development and comfort.  I have already achieved more controlled movements through these sessions.

These sessions cost approx £45 each and need intensive blocks to work best.

Chiropractor - I have been receiving weekly sessions which have helped me greatly with my comfort as my joints and stiffness become so strong. This has helped to release my body enabling easier movement and is also fun as my therapist helps me to dance which helps my brain learn new messages for my muscles and nerves.

These sessions cost  £55

Please help my Mum and Dad to fulfil their promise to me.

Should we exceed the target amount (or if we do not raise enough funds, or if they cannot be used for any other reason) the funds raised will go to the general funds of Tree of Hope to assist other sick children.

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