Support Thank you for joining and supporting Jacob and George's fundraising page. Both boys aged eight and nine have Spinal Muscular Atrophy Type 2.
This is a progressive muscle wasting condition affecting the external and internal voluntarily muscles. For example walking, crawling, sitting, swallowing, coughing and breathing. Jacob and Georges mums met on a support group years ago and the families have remained close friends ever since, even though they are at opposite ends of the country. Jacob and George have formed a bond for many reasons
but also because they were both enrolled three years ago in 2018 on a trial for the first oral treatment for SMA. Jacob went to Belgium and George to France because this trial was not available here in the UK, and the process of getting the treatment available here is currently being fought as we type. Along with the orginal expensives for participating in the trial for the first two years having SMA accumulates many other costs such as
Physio (£65 to £90 an hour per week)
Hydrotherapy ( £50 to £65 an hour per week)
Manual wheelchair (£2500 plus, every few years)
Power chairs (24k plus yearly insurance, servicing and growth)
Orthotics ( £850 depending on postcode)
Equipment (£30 to £750 per item)
Horse riding (£50 pounds per hour per week)
Trikes (£2500 every 2 to 3 years)
Also adaptations, outdoor play, deposits for adapted vehicles cost alot of money and are constantly changing as the children grow. So for the above reasons we as Jacob and Georges mums have decided to set up this fundraising page, raffling items at a small cost per number. Any money raised the boys will receive 50/50 between them and it will all help towards the above mentioned unless this an urgency for one of the boys to receive vital medical equipment then the money will go solely to that boy.. We will post regular photos and updates of any new equipment, physio etc on this page, along with invoices and receipts. We thank you in advance for your support and kindness. Sophie and Lucy
