Get Leo the adaptations he needs

Hi my name is Suzanne and I'm a community nurse in the nhs and a mum to a beautiful special little boy called Leo who is currently 3 years old. I live with my husband James and my daughter Mia. Leo was born full term with no concerns whilst pregnant, all scans were normal. When Leo was 5 months old we noticed some strange movements, as we were concerned we took him to A and E 3 times before we were listened too. Leo had an eeg which confirmed infantile spasms ( a dangerous type of epilepsy) we then got admitted into hospital and they preformed an eeg which eventually gave us the diagnosis of lissencephely ( smooth brain) lissencephely is a life limiting condition only affecting 1 in 100,000 children born in the UK. Lissencephely affects children's tone, causes seizures, development delay, feeding issues and often children need 24 hour care. There is currently no cure for lissencephely. As you can imagine this was a huge shock to us as a family as we were completely unaware and never thought we would have a disabled child as we were already parents to another child, Leo's sister mia who is completely healthy and concieved via ivf after years of trying, so we were so happy before we knew of Leo's diagnosis and thought our family is now complete. We have never asked for help before but we now feel we have no choice. We need to get our home adapted for Leo's needs, we need a wet room, downstairs bedroom and hoist as Leo is non mobile. We have currently carrying leo around the house, up and down the stairs. I've nearly fallen a few times carrying him up and down the stairs. We have been awarded a disabilty facilities grant (DFG) but we have been advised that the maximum award is £30,000 and £20,000 discretionary fundraising but we are aware our adaptation will be £78,218 which leaves us a short fall of £28.218. we have to fund the gap ourselves. We simply don't have the funds without taking loans. If we take out loans we could potentially put ourselves into financial hardship. We don't expect to raise £28,000 but whatever we raise will help towards the adaptations. We are having to face things as a family we never thought we would face.

Thank you for all your support x