Home adaptations and equipment for Alfie

Hi, my name is Laura. I am wife to Morgan and mother to three beautiful boys. Freddie 9, Tommy 6 and Alfie 2.

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. 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.

Alfie is on a medical ketogenic which has stopped his tonic-clonic seizures for the past 18 months. Alfie has recently started CBD oil we are hopeful that we will see his seizures reduce further with this treatment. As well as being on 2 epileptic medications am and pm. He has a ng tube for his main nutritional needs, he is due to have a gastrostomy on 28th May. This will reduce any aspirations, which cause recurring chest infections, nose bleeds and stop him pulling the NG tube out. Alfie does manage one smooth puree meal a day which I batch cook weighing out all ingredients to get correct ratio for medical keto diet.

Alfie still has multiple seizures day and night that need to be monitored and occasionally treating with rescue medication. Alfie has over 24 specialist professionals involved in his care for his complex medical, physical, visual, communication and learning needs. This means lots of appointments and travelling, I am most grateful for the support from all these people.

Alfie has the cutest little face and smile, he adores cuddles, singing, suckling his dummy, loves a head rub and massage. Enjoys walks in the fresh air and looking around at the bright sky and shadows of the trees. Alfie also likes swimming in the local leisure centre. Alfie the past 6 months has gained the strength to roll, which he thoroughly enjoys during floor play. Alfie has gained so much awareness of his surroundings using his vision also within the last 6 months.

My reason for starting fundraising is because we need to make changes to our home to suit him. I could not return to work as Alfie needs 24 hour care, we live on Morgans wage from the army, living on one wage having a family is hard without additional complex needs.

Alfie’s Occupational Therapist gave these recommendations, A bedroom downstairs with a wet room, including a specialist bath which is approximately £16,000 alone. Level surface at rear with ramp for Alfie to have access to back garden, a ramp at front for main access into home. Ceiling track hoist in bedroom/wetroom and living room. Quotes received for these adaptions were ranging between £145,000 - £180,000. This completely exhausts the disability grant which is currently £36,000

We have recently come to the hard decision to sell our lovely family home. Look at remortgaging and fundraising to invest in a bungalow where the adaptations will fall within the grants. It does not seem fair for us to be in financial strain because the grants have not increased with time and inflation. The disability grant has not increased since 2008. A bungalow will provide Alfie everything he needs and deserves for easy day to day life.

Thank you so much for taking the time to read,

Kind regards

Morgan and Laura Retallick