❤️Fundraising for Gino ♥️
gino has 1p36 deletion syndrome. This occurs in 1-10,000 births. It can cause a range of medical problems different for every child. Gino has drug resistant epilepsy, west syndrome, global development delay, left ventricular non compaction cardiomyopathy, non verbal, hearing loss, swallow problems, mobility problems, respiratory problems and possible asthma.
he is the most determined little boy and amazes us daily! He knows what he wants and is very impatient like mummy! He’s also laid back and chilled like daddy!
due to Ginos diagnosis life is a little different to what we thought it would be. He is everything and more, but it does come with it’s hard times.
financially it becomes hard work when living with special needs. It automatically increase the price of everything ten fold! Traveling is more difficult, medication and private treatments are more Expensive, paying bills when on lower wages as you can’t work as much, using saving to adapt our home and garden. Everything to make life more manageable and to give us all a better quality of Life.
Due to it being drug resistant we have tried many other therapies with no positive outcome. Privately there are more options but aren’t funded by the nhs. Thisis our main priority.
other than that we just want to give Gino the life he deserves and make memories as a family. Maybe one day he can feel the sun on his skin and dip his toes in the sea, we would love to meet up with our 1p36 families at an annualmeeting down south. Foot steps down south is a 3 week intensive course for children like Gino down south we would love to take him. We hate that the barriers of cost hinders this. Mummy is currently works part time and daddy is full time Carer.
from a very proud mummy and daddy who are overwhelmed with the love everyone has for our boy.
fundraising and crowd funding to help with the cost of life with a disabled child is a hard pill to swallow as parents. But over time we realise that everyone loves our boy as much as us and that it’s no weakness to accept help.
so if you would like to spare a penny and would like to support and make memories with Gino we would be eternally greatfull
we also hope to have many exciting fundraisers that can get people involved, have some fun and scares and make memories might even get wee g involved ♥️
love the londras
@ginos journey
xxxxx