Help Valerie raise funds for her best friend

Carol Mabry Schwimmer is organizing this fundraiser on behalf of Karen Kahn.

Donation protected

Hi!

My name is Valerie Schwimmer and I am raising money to help my best friends. I have known Amelia and Makenzie since we were all just a year old. They are twins just like me and my sister. All four of us are now almost 12 and in 6th grade. Amelia (I call her Emmie) and Makenzie (I call her Makie) have juvenile Batten disease (CNL3).

Juvenile Batten disease is a rare and fatal neurological disease with no treatments or cure. Symptoms include loss of sight and mobility, seizures, disrupted sleep, and dementia. The first noticeable sign of juvenile Batten disease is often loss of vision, which begins between the ages of 5 and 10 years in previously healthy children and tends to worsen rapidly. Life expectancy is from teens to early twenties.

Both Emmie and Makie have now lost their eyesight, have seizures, rarely sleep at night, and struggle to walk. They also have a hard time remembering things but they always remember me and my sister Natalie.

I want everyone to know how much I love my best friends and how much I want to help them! I am shaving off all of my hair to make people more aware of this horrible rare disease. I also hope to raise enough to get Amelia a cool new wheelchair.

Our family friend Randi Sumler who is a cosmetologist and barber will be buzzing off all my hair on Sunday, Dec 5th. She is offering free buzz cuts to anyone that wants to join me in telling Batten disease to buzz off! We will be at First Christain Church, 807 SE 14th Street, Bentonville, AR 72712 from 1pm to 3pm.

Will you help me tell Batten to buzz off by giving a donation, shaving your head, or coming to watch me?

If you want to learn about Amelia, Makenzie, and Batten disease, watch this short video.

Amelia and Makenzie's story

Here are some pictures of us