Alaska, Everest & Wren fight Batten Disease

Alaska, Everest and Wren are our 3 delightful grandchildren they are 9,6 & 3. All three have been affected by an ultra rare genetic disease called Batten CLN3.  

The story begins with Alaska.  About four years ago, shortly after Covid-19 shut down church services, schools, and preschools, Alaskas's mom and dad (Sydney and Sam) noticed he was having trouble seeing some things. For example, he would stand right in front of the television and put his face super close when he was coloring or working on his letters. "Okay, Alaska needs glasses," we all thought.

Sam & Sydney took him to one eye doctor after another. After finally being referred to one who specialized in genetic disorders, they received the shocking news that Alaska has Batten Disease, a neurodegenerative disease affecting his brain cells and nervous system. Worse yet, they learned it was a fatal and fast-moving disease for which there is no cure. You can read more about Alaska's form of Batten disease below.

Everest is my equally delightful five-year-old granddaughter who loves fantasy characters like mermaids, unicorns, and unique variations of ponies and princesses.   After learning about CLN3 Batten disease, we knew there was a 1 in 4 chance she would also have it.  Unfortunately, this fall our fears were confirmed. So far her symptoms are mood swings and limited night vision.  

 

Alaska and Evy are an amazing team as they help one another navigate life.   Alaska is learning braille and white cane mobility. As Alaska has been losing his sight more and more, Evy is always there to help.  

In the spring of 2023 we got the horrible news that Wren their little sister also has Batten CLN3.  Yes, even though the chances are 1 in 4, all 3 Larson kids are affected.  Wren was test at a much younger age and right now is doing typical 3 year old things. Sometimes we call her Wreck-It Wren as she tears through life with her special joy. 

Over the next several years, Alaska, Evy and Wren will have many needs. For example, one trip to see the doctors at a hospital specializing in Batten disease costs between $2,000-5,000. They will also need to make their home accessible for them and eventually purchase wheelchairs and a vehicle that will meet their needs. In addition, there will be medicines necessary to treat the symptoms they will develop and special tools they will need to allow them to feel included.

The funds raised through this account will go to a particular account to be used for Alaska,  Everest & Wren's special needs as a result of Batten disease.

We have a strong faith in Jesus Christ and believe He can undoubtedly heal them.  We invite you to pray with us for their healing. We are asking God to grant peace and strength to the entire family.

Additional information about this disease:

Juvenile Batten disease (CLN3) is a rare and terminal disease that attacks the central nervous system. Usually, this form of Batten disease is diagnosed at 5-6 years of age when symptoms become noticeable. Symptoms include vision loss, seizures, dementia, speech and motor problems. These symptoms continue to progress until the child requires 24-hour care and eventually death. Juvenile Batten disease is terminal, and there is no cure. The life expectancy with Batten disease is teens to early twenties. Before being diagnosed, children with Juvenile Batten disease appear perfectly healthy and appear to be "normal kids." Because of this, the diagnosis often comes as a massive shock to the family.