Noah’s Battle Against Batten

My name is Maren and I am fundraising for my son Noah. Noah is living with a serious disease called CLN3 Batten Disease. Batten Disease is a fatal disease of the nervous system that begins in childhood. It belongs to a group of disorders called Neuronal Ceroid Lipofuscinoses (NCL’s). There is currently no cure for this disease and it is always fatal.

We have started this fundraiser at the suggestion/request of those following along in Noah’s journey. The funds raised here would be use for medical care and treatment as Noah’s condition progresses.

There is a drug called Miglustat that has shown promise in early trials to help children with this condition. We have heard reports from families of participants that they have not only seen a stop in the progression of the disease but an improvement in cognitive function! We are very hopeful that Miglustat will slow the progression of the disease and give Noah a better quality of life and hopefully a longer life. Without an intervention, Noah will experience the loss of cognitive function, loss of the ability to eat and speak, and loss of the ability to walk and play. This disease takes every single function away from the child and then takes the child. We have already noticed the impacts of this disease on Noah. He is currently blind and is experiencing difficulty with gross motor and fine motor abilities, speech, memory, and severe cognitive decline. Noah has experienced a decline in his daily stamina and now needs to use his wheelchair for outings that require walking. The clock is ticking and time is not on our side.

We have received a prescription for this drug but it will cost 20,000$ per month. We have applied for insurance to cover the drug but were denied because the drug is not currently approved by the FDA for this use.

A fellow batten family has worked close with Cost Plus Drugs who is willing to manufacture the druge for our kids at the significantly reduced cost of 2,000.00 per month. This is an amazing development but still, this expense is not attainable for most families.

We understand that we live in challenging financial times and we would never want someone to give when it is at the cost of their own comfort and needs. Well wishes, prayers, good vibes, and positive feedback are always welcomed and deeply appreciated. We would sincerely appreciate the support of as many shares as possible to help raise awareness so this disease can one day be cured.

Please help us share Noah’s story and raise awareness for Batten Disease.