Today is rare disease day. Over the last 4 years I have been helping to raise awareness about CCHS. An extremely rare disease that means that those affected can not breathe unaided once they are asleep. @cchsnetwork
is the charity ran by our best friend Adam who literally grew this foundation alone with other parents for his son @teddyjoefox
to raise money to fight this, fund research and pay for medical bills which they receive NO government help with. As with all rare diseases the funding is overlooked and they lead this fight alone. This year I was introduced to @keepmebreathinginsta
an English family who are doing the same work for their son Casper in the uk! They have made tremendous developments! Next month doctors from France and the US will be flying to London to discuss their plans for a pacemaker meaning that EVERY child who has CCHS will hopefully one day be able to live and breathe freely from a machine. This is huge because it will be available to every mutation of the gene unlike medications which are usually specific to a certain type of CCHS. I feel it’s important to point out that this alone won’t free every symptom of CCHS but it will allow independence which is all any parent wants for their child. I feel so grateful to be able to share this news with you and hopefully we can all be a part of changing peoples lives!!! A miracle if this happens and we keep raising money and awareness!!