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Jacob's Journey

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This is Jacob our beautiful little boy. Jacob turned two in July of this year. He is a lively, affectionate and very bright young boy. Sadly however, Jacob has Spastic Diplegia Cerebal Palsy which is a neurological issue which affects Jacob’s mobility. He is unable to stand or walk independently. Although Jacob’s diagnosis is that he has mild SDCP and thankfully the damage that has occurred will not get any worse his mobility is unlikely to get any better without intensive physiotherapy and significant medical support. If this does not occur then the likelihood of Jacob requiring orthotic surgery in future years becomes increasingly higher. We would like to avoid that event and we hope that by Jacob undergoing an operation called Selective Dorsal Rhizotomy (SDR) we can substantially reduce that risk. We are in the process of screening Jacob for this potentially life changing operation at St Louis's Children's Hospital in America. The younger Jacob is having the operation the less likely it will be that he will endure painful muscle contractures which would require painful surgery to correct.  

SDR is a complex operation and a big undertaking for Jacob and us as his parents and family but we, along with the medical professionals feel this would be extremely beneficial to Jacob. This is not a step we are taking lightly and we can only imagine the road that lies ahead of us but as parents we want to give our child the best possible chances in life and this we feel is one way of achieving that. We are told by UK medical professionals that Jacob is a typical candidate for the operation and that the rewards could eventually see Jacob walking unaided. At the very least it would mean by reducing the spasticity in his muscles Jacob can live as pain free a life as absolutely possible. This alone would mean the world to us and I’m sure Jacob. The last nine months have been extremely difficult to say the least but also so rewarding at the same time seeing Jacob take his first steps on his walking frame. The effort and energy that Jacob’s body has to use to make even small progress is huge. We are so proud of how much progress he has made so far and we want to keep encouraging Jacob reach his goals.

Anyone who has spent any time with our little fella will know what an absolute treasure and delight he is. He has brought light back into our lives after the most dark and devastating of times after our first son passed away. He is a determined young boy and we hold on to the belief that one day we will see him take independent steps and go on to lead as normal a life as possible.

It is our mission over the coming weeks and months to start a fundraising process to get Jacob to St Louis. We have been told that in all we should be aiming for a funding target of £70,000 which will include the operation, transport, accommodation, a compulsory return post op visit approximately four months later and on-going intensive physiotherapy for approximately 18-24 months post op at a cost of about £800 per month.

As with many things in life unless and until you have been affected by it you don't often know about it. We certainly didn't know much about SDCP. We do know however that we will do whatever it takes to get our precious son the best possible care available and the best opportunities in life. We will be hosting fundraising events in the coming months and posting details of a fundraising page. If anyone would like to share fundraising ideas for this cause we would be extremely grateful. Thank you so much for reading, sharing, ‘liking’ this page. If you feel you would like to donate to help us help Jacob then we want to thank you from the bottom of our hearts.  xxx

Donations 

  • Gemma Price
    • £10 
    • 5 yrs

Organizer

Hannah Phillips
Organizer

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