Please help Easton battle terminal brain disease

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Leslie & Darin Buckingham and 2 others are organizing this fundraiser.

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Hi, thank you for visiting our fundraiser. We are the loving and proud parents of Easton: our 4.5 year old son who was diagnosed with autism, epilepsy and now a rare, severe, and life ending brain disease - Batten's disease (CLN2).

Over the next few months and years this disease will take so much from Easton, before long it will take away our little Easton.

We are devoted to making every day count, building family memories while we can and while Easton is still able to do so. We are asking for your help to ensure that we may continue to do everything possible for Easton to access the best care, clinical trials and most importantly live his beautiful little life to his fullest.

Update (Feb 27):

On February 14, 2022 Easton had his Ommaya Reservoir (catheter) inserted by the Neurosurgery team at Sick Kids. The surgery was carried out with no complications and Easton was able to receive his first dose of Brineura, a life altering treatment two days later.

How'd we get here?

In Jan 2021, Our world changed when we received Easton’s autism diagnosis, we spent the next few months learning about autism, accepting a new reality of what his new beautiful autistic life could look like while fighting to get him the right therapies and educational support for his needs. In September, after mounting concern that he may be experiencing seizures during his sleep we brought Easton to Sick Kids hospital emergency room, only to be sent home with an ophthalmology appointment and direction to wait months for a neurology referral. Two weeks later our fears were confirmed as we watched helplessly while Easton experienced his first severe seizure. Back to Sick Kids ER we went, this time in a vehicle with flashing lights and a really loud siren. Within one week Easton had two more seizures and was diagnosed with Epilepsy. We started to look for answers as to why, all of a sudden, our little boy was experiencing frequent seizures?

Over the next few months our sweet boy underwent a slew of testing: ECGs, an MRI, genetic testing, blood and enzyme tests. And on January 4, 2022 - a year after his autism diagnosis, Easton was diagnosed with Batten’s disease. A terminal brain and nervous system disease with no known cure. We were told that children with Batten disease decline rapidly and don’t survive past childhood.

At that moment I wanted to crawl under the covers of the nearby bed and stay there. Easton deserves to live his beautiful life, he doesn’t deserve this.. Wyatt deserves to have a brother… What about Wyatt - “25% chance” is what the doctor said. How am I going to do this?
We held each other as we cried, and then we went and hugged our baby.. 'Because he is still here'.

What is CLN2?

Batten Disease (Neuronal Ceroid Lipofuscinosis Type 2 “CLN2”) is a subtype of Batten Disease which affects 1 in 100,000 children globally. Most CLN2 patients are young children like Easton. Patients experience a rapid decline in overall health and quality of life due to the onset of seizures and progressive musculoskeletal conditions leading to mobility loss, dementia and blindness. Life expectancy is 10-12 years of age.

What does the road ahead look like?

Over time, without a cure - Batten's disease will take over Easton's beautiful body and he will lose his ability to walk, eat, and see, before surrendering to the disease in early childhood. For those who know Easton, he is autistic and non-verbal; movement (dancing, running, jumping) is how he experiences his surroundings and he loves to eat!

There are estimated to be 7000 rare diseases globally and fewer than 5% have a treatment approved by the FDA.

There is hope for Easton as there is a very new therapy available to CLN2 families that slows the progression of CLN2 by up to 80%. Easton is eligible to receive a bi-weekly enzyme replacement therapy called Brineura that is delivered into his cerebral spinal fluid through a catheter that is surgically inserted in his brain. This will prolong Easton's beautiful life and give our family more time together.

Without access to Brineura Easton’s abilities will decline rapidly. Even still, we are preparing for the road ahead and this is why we have started this campaign. There will come a time when one of us will have to stay home full time with Easton, he will be wheelchair bound and require a feeding tube for medicine and nutrition. Brineura won’t stop Easton from going blind, and so access to new clinical trials and the ability to travel to meet specialists in CLN2 and participate in any trial that will improve Easton’s quality of life are critical.

The Batten Disease facts from real Batten Families as reported by Batten Disease Support and Research Association (bdsra ):

- 83% of families have found it challenging to keep regular employment since diagnosis
- 86% of caregivers believe they need more resources to support their grief journey
- 80% of families have a need for better access to medical specialists for their child
- 73% of families have had to quit or cut job hours due to the demands of being a caregiver
- Almost 42% of Batten Families deal with out of pocket costs for medication expenses

Thank you for your support, this campaign will help us:
- Purchase medical and tech devices that will ensure Easton can continue to attend school (his happy place), help Easton through bi-weekly treatments and help him remain mobile as long as possible (walker, wheelchair).
* Ontario’s ADP program covers 75% of the cost of some equipment.
* Ontario has cut funding for Autism and waitlists for the new program (which is 2 years delayed) are long leaving families to support most therapies out of pocket as we have done over the last year.
* Easton will require new equipment (walkers/wheelchairs) frequently as he grows.
- Continued access to private therapy to help Easton developmentally: Physiotherapy, Equine Therapy, Occupational Therapy, Play Therapy (ABA), Social Skills classes, Speech Therapy, and others.
- Make modifications to our home to keep Easton and our family in our home together as his physical and therapeutic needs change
- Eventual purchase of an accessible vehicle when Easton becomes wheelchair bound
- Enhanced 1:1 care to help Easton attend camps and experiences that can be tailored to his special needs.
- The ability to continue to make happy memories that will last us a lifetime, long after Easton is taken away from us.

Today Easton is the same, happy little guy who finds a special place in the hearts of all he meets. He's a little more wobbly these days, but still loves his music, food, being with his friends at school and playing with his little brother Wyatt.

As Batten’s is a genetic disease, some families have multiple children with CLN2. We received confirmation on February 18th that our Little Wyatt does not have Batten’s disease.

If you have funds to donate beyond this page please visit the Canadian CLN2 foundation, founded by two incredible parents of two children diagnosed with CLN2. Proceeds go towards funding clinical trials and supporting Canadian families like ours.

https://canadiancln2.org/

The team at Sick Kids has been incredible. If you have funds to donate beyond our page please donate to help build the new Sick Kids at www.sickkidsfoundation.com

Any funds raised on our page that cannot be used to support Easton's battle with Batten's disease will be donated with discretion to foundations dedicated to supporting families like ours who are fighting rare disease such as the Canadian CLN2 Foundation and the Isaac Foundation.