Our Son Jacob was born prematurely at 32 weeks, in 2013. He did amazingly well and was discharged after three weeks in the Neonatal Unit. His development was as expected the first few months of his life; however, at around 5 months old we noticed he started missing his milestones. He couldn't sit, didn't learn to crawl or pull himself up. At 18 months old Jacob was diagnosed with Spastic Diplegic Cerebral Palsy, affecting both his legs. Due to the stiffness in his legs we have been told Jacob will not walk without SDR surgery.
Selective Dorsal Rhizotomy (SDR) is an operation developed by a Doctor in Missouri, America that can be performed to release the spasticity and give Jacob the chance to walk. We will need to fundraise to cover the cost of the procedure.
The money raised for Jacob will enable us to fly him out to America to have the operation performed by the Doctor who pioneered the SDR surgery. It will also pay for the intensive private physiotherapy required for two years after the operation, as this will not be available to him on the NHS.
Jacob is a happy, determined little boy that just wants to learn to walk so he can join in and have fun with his two big sisters. The frustration is beginning to show with him as he grows up and realises his limitations. He so desperately wants to walk but his legs just won't let him.
As a parent it is heartbreaking to have to sit back and watch your very bright, smiley little boy struggle to get around, when all he wants to do is walk. It would mean the absolute world to us to be able to raise this money for him to enable him to have this operation and one day watch him take his first steps.
(Written by Jacob's mum Nicola)
Jacob was 2 in November.
Jacob has Spastic Diplegic Cerebral Palsy, affecting both his legs.
SDR involves sectioning (cutting) of some of the sensory nerve fibres that come from the muscles and enter the spinal cord. This will reduce the spasticity and stiffness that Jacob has in his legs.
No. He can now sit unaided and he tries taking steps with someone supporting him but he is very unlikely to walk at all without SDR surgery.
It has been. In 2014 the NHS funded 240 SDR operations over a trial 2 year period. This trial is ending in March 2016 and at present on going funding has not been secured for any further surgery to be carried out on the NHS.
Yes. However, the cost of the operation is pretty much the same in the UK as the USA. The reliability of the USA is much better and in the USA it will be carried out by the doctor who pioneered the surgery and has done it thousands of times.
The operation itself costs approximately £30,000. The other £35,000 is to cover the cost of travelling to the US, accommodation for the 4/5 weeks we will be over there and then the two years of physio therapy that Jacob will need afterwards at approximately £250 a week. He will also attend SDR fitness in Wales costing £1200 a year.
Not yet as it depends how quickly we can raise the funds. We have an optimistic aim of this summer (2016) in mind at the moment but will provide updates on this as months progress.
We will donate that to help other children like Jacob with Cerebral Palsy.
Upcoming events in aid of Jacob's journey - his wish to walk:
25th - 30th September
Duncan Bell climbing the six peaks in the UK.
Sunday 25th September
Kirsty Watts running the Cheltenham half marathon.
Gemma Evis climbing Mount Kilimanjaro.
Sunday 2nd October
Tamie Slade running the Cardiff half marathon.
Friday 4th November - Worlebury Golf club, Weston-super-Mare
Details TBC. Ring 01934 413139 for tickets.
Sunday 6th November
Teresa Whatty running the Cardiff half marathon.
Events already held in aid of Jacob's journey - his wish to walk:
Wednesday 24th February - Mothercare, Weston-super-Mare
Week commencing 7th March - Little acorns pre-school, Weston-super-Mare
Friday 11th March - Club Tabu, Boulevard, Weston-super-Mare
Saturday 19th March - Rascals, Weston-super-Mare
Sunday 3rd April
Saturday 9th April - Borough Arms
Saturday 23rd April - Weston Beauty Clinic
Saturday 23rd April - Milton baptist church, Weston-super-Mare
Wednesday 4th May - Playhouse
Friday 6th May - The Wine Shop, Winscombe
Sunday 22nd May
Friday 27th May - Weston college
Saturday 11th June - Baytree Rec, Weston-super-Mare
Friday 1st July - Worle School
Friday 1st July
Saturday 2nd July - Batch Country House, Lympsham
Friday 8th July - Locking Primary School
23rd - 26th July
Sunday 24th July
Sunday 31st July - Lamb, Worle
Tuesday 2nd August - Nailsea School
Sunday 4th September - Bristol
Thank you to each and every person who has made any contribution whatsoever to help us on our quest. They include, but are not limited to, the following:
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Print this form to help you gain sponsorship from your family and friends.
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