Just4Children
Ruben's Journey
Just4Children are wanting to raise funds for Ruben to receive physiotherapy, specialist equipment, hydrotherapy and other therapies to help him become more independent and to reach his full potential in life.
Story
Ruben is 5 year old little boy from Boston in Lincolnshire who made a quick appearance at 30 weeks and went into respiratory arrest. Ruben is such a little fighter and our aim is to optimise his chances in life.
Ruben had an MRI brain just after his 1st Birthday and thats when we got the devastating news. He was diagnosed with Bilateral Periventricular Leukomalacia (PVL) and asymmetric quadriplegic cerebral palsy. We were told that the brain damage will have a serious impact on Rubens life.
His future is unknown and he may or may not walk and if he does, wont be unaided. He may not speak and he also might develop cognitive and behaviour difficulties too. As a parent this is not what you want to hear or want for your child.
We are forever grateful to the NHS and all the professionals involved in saving Rubens life but we know that NHS services are very stretched and cant provide all the care that Ruben requires. NHS only offers Ruben OT once in a few months and physio once a week. Then its up to the parents to do the exercises at home. We are and always have been committed to the multiple exercises and home therapies that we have been set to do. We try our very best but we are not specialists and dont have the skills or equipment that physios do. We feel frustrated that Ruben is not able to access what we think would be helpful for Ruben but we are keen to make sure he doesnt miss out on anything.
Ruben is currently taking baclofen and waiting on an orthopaedic surgeons assessment for possible botox injections and AFOs. We are also hopeful that Ruben will be accepted for a life changing operation called Selective Dorsal Rhizotomy in the future. The operation is funded by NHS, but we still need to raise monies for Just4Children to pay for Rubens aftercare.
All the money raised will help us provide as much physiotherapy sessions, equipment, hydrotherapy and even alternative therapies for as many years as possible. The longer we can keep these therapies going the more Ruben is more likely to be able to become independent and reach his full potential in life.
Thank you.
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