Supporting the Saunders Family

On May 25th, 4 year old Isla received her final diagnosis of Batten Disease, CLN2. Batten Disease is an ultra-rare, genetic disorder that affects the brain and nervous system. This disease does not have a cure, and this is a terminal diagnosis.

They are in the early stages of her diagnosis and are still learning as much as they can.

One thing we have learned thus far is that because this disease is so rare (approximately 14,000 children worldwide are known to be diagnosed with Batten Disease); the amount of research and funding for the disease is minimal. We will do everything within our power to bring awareness and support to this disease.

We are raising money for the various costs that come with this diagnosis. Heidi and Shane will eventually need modifications done to their house to accomodate Islas changing needs, to ensure her quality of life is as good as it can possibly be. Funds rasied will also go towards medical bills, gas, hotel stays in Boston for treatment, and anything else that can alleviate additional stress.

For those of you in NH - we are also throwing a fundraising event on August 5th if you would rather make a donation in person and without fees.

Check it out here - https://fb.me/e/Fw5ILcSP

We will create an additional page on Facebook to provide updates.

Thank you for your support.