Story
Thanks for taking the time to visit my JustGiving page.
Meet Jack Baird, he is 4 yrs old. He lives at home in Ryhope, Sunderland with Mum Gemma, Dad Garry big brother Lewis who’s 10 yrs old and his little sister Lucy who’s 8months old.
Jack was diagnosed at 16 months old with a rare genetic condition called Sanfilippo Syndrome or the proper term Mucopolysaccharidosis 111 (MPS-111)
This is life limiting, he cant break down complex sugars, so they build up in his body, he is way behind in his milestones. The complex sugars will eventully eat away at his brain, he wont be able to walk, swallow and talk. Children like Jack with Sanfilippo Syndrome rarely make it to a teenager.
Jack attends school where he loves walking, He’s loves music and is a big fan of Little Mix & Cheryl Cole.
Here is what your donations can buy:
- £5 buys 10 small flasks to grow cells for testing the effectiveness of therapies for neurological diseases
- £16 buys 200 storage containers for blood samples so that patient samples can be stored and used to test effectiveness of therapies and to develop new biomarkers of the disease
- £25 supports a tree planting and inscription in memory for one bereaved family at the MPS Childhood Wood
- £60 would enable one family to attend a regional family event, such as a trip to Cadbury World, to have fun with other MPS families;
- £100 is the average cost of a home visit from a member of the Advocacy Team to an affected family providing practical and emotional support
- £200 enables a child who lives with a brother or sister with MPS, to attend a Sibling Activity Weekend encouraging peer
- support and an opportunity to share stories and have fun!
- £1000 would fund 6 specialist MPS clinics in a year