A local family are asking for help in raising funds to help make home adaptations after their son, Alfie, was found to have a rare genetic condition that cause multiple daily seizures.
Here is a message from Alfie’s Mum:
“Hi, my name is Laura. I am wife to Morgan and mother to three beautiful boys. Freddie 8, Tommy 5 and Alfie 1.
“Alfie was born 6 days overdue at home after a healthy pregnancy and natural birth.
“After a hard start to his life at 5 months old we found out he had a rare genetic condition called ALG13.
“This even rarer in boys as it is an x chromosome linked condition. In Alfie’s case this is de novo, which means it’s not inherited, it’s a mutation. ALG13 comes along with developmental and epileptic encephalopathy.
“Alfie’s epilepsy is intractable, drug resistant. He is on a medical ketogenic which has helped reduce seizures over the past few months. He has a ng tube to top his nutrition. Aflie does manage smooth puree meals which i spend days batch cooking weighing out all ingredients to get correct ratio for diet.
“There is no prognosis as it is a rare condition, we take every day as it comes and enjoy all the small things life brings.
“I did not return to work as Alfie needs full time care. He still has multiple seizures day and night that need to be monitored and occasionally treating with rescue medication. He has alot of specialist care around him meaning lots of appointments and travelling I am most grateful for all these people.
“My reason for starting a go fund me page for Alfie is because we need to make changes to our home to suit him, which will also work well for us as a family. He needs a bedroom downstairs with a wet room, a specialist bath is approximately £15,000 alone, I am awaiting accurate quote.
“Decking with ramp so Alfie has access to back garden, and a ramp at front for main access into home.
“Alfie has an Instagram account if you want to follow to keep up to date, Alfie_Palfie”
You can support Alfie by visiting – https://www.gofundme.com/f/318j9q7a20?utm_campaign=p_cp+share-sheet&utm_content=undefined&utm_medium=copy_link_all&utm_source=customer&utm_term=undefined
