UPDATE 1.27.26

We are back at it. Insurance denied us AGAIN! Please follow us on the FB page below and join our NEW GoFundMe campaign:

If you want to follow our journey so you know how you're helping, you can join our FB group: Ella-Mae's Batten Battle

Another avenue to show your support via donation is our Venmo: @EllaMaesEndeavor

If you can't make a monetary donation, you can show support by sharing our story and by prayer. You can share our story by sharing this GoFundMe, Venmo and Facebook stories/updates on the Ella-Mae's Batten Battle page.

Update 1/25/2026

I never wanted to have to write this again… but here we are.

Our daughter Ella-Mae, who turns 11 in March, has CLN3 Batten disease, which is a rare, fatal, neurodegenerative childhood disease. There is no cure. There is only time.

For the past 1.5 years, Ella-Mae has been on a medication called miglustat. During that time, something incredibly important has happened.

She has not declined.

Not cognitively. Not physically. Not functionally.

Anyone who knows Batten disease knows that stability is not the norm.

And yet, with our new insurance, her medication has now been DENIED.

Stopping this medication puts her at real risk for decline. Decline that cannot be reversed. And yet, we’re being asked to accept that risk because of an insurance decision made on paper, not based on our child.

This medication, the one that has helped keep her stable, will cost over $10,000 per month out of pocket if insurance refuses to cover it again. This is the cheapest route that is not gauranteed. It can cost up to $20,000 a month out of our own pockets.

That is $100,000-$240,000 per year for a child whose disease will progress without intervention.

Our $2,500 a month hookup is no longer available

A newly published medical study outlines the expected timeline of decline in children with CLN3 Batten disease. That decline is predictable. It is documented. It is devastating. I attached it for everyone's review.

And yet, despite Ella-Mae’s stability on this medication, despite the science, despite her medical history, coverage was still denied.

We are fighting this hard.

We are appealing. Escalating. Submitting medical evidence.

We will not quietly accept this.

But we may need help again.

If this decision is not overturned, we may be forced to fundraise $10,000–$15,000 EVERY MONTH just to keep Ella-Mae on the medication that is helping her hold on to who she is.

I am asking YOU to:

-Share this post

-Talk about Ella-Mae and all the children with CLN3 Batten disease

-Help amplify our story

-Stand with us while we fight this denial

This is wrong.

And sadly, this is not rare to families like ours but it shouldn’t be normal.

We are not giving up. We will keep fighting for her, and for every child like her who deserves better.

Thank you for loving her with us and standing with us as we fight.

Mamma loves you Ella-Mae. I won't give in.

https://link.springer.com/article/10.1186/s13023-025-04174-5?fbclid=IwY2xjawPe5Z5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZA80MDk5NjI2MjMwODU2MDkAAR6_Ra599J-TIfBY1Zb44FPHTh8yFw_WKGYMonj2-suWgkGW8afvN5Lhe173yw_aem_yrOB_X-n83sKkRqmFw7CEg

Update 8/07/2023

***To be transparent:

Every penny will first go towards Ella-Mae's LIFE-SAVING drug, miglustat.

This drug can cost up to $20,000 per MONTH! Our wonderful doctor prescribed it but our primary insurance and Medicaid disability both denied the authorization. This means we would have to pay out of pocket for this life-saving drug. Phase 1 and 2 of the clinical trial for Batten-1 aka miglustat has shown great promise for slowing down symptoms. Phase 3 was pushed to the end of this year and the FDA has mandated a placebo group. Therefore, families won't know for 2 years if their child had miglustat vs the sugar pill. That is potentially 3 years of wasted time. This disease takes away childhood even faster than that! Please help us spread awareness!

Anything extra will go to medical travel costs and we strongly want Ella-Mae to experience as much as possible before losing all her sight and especially before becoming incapacitated.

We have raised the appropriate amount of funds for the drug for this year! However, moving forward, we still hope the FDA, Medicaid, or our primary insurance has a change of heart and starts to cover it in the next few years. Ella-Mae will have to be on this for life until other therapies become available.

We promise to keep you updated. We will share with you how your donations have contributed to the adventures of Ella-Mae and extending the generosity to other families affected by this dreadful disease by forming our own non-profit, which should be finalized soon*** (end of update)

Toward the end of 2022, Alison Anstaett’s daughter Ella-Mae was evaluated for her vision. Based on initial vision testing, which concluded Ella-Mae is already legally blind, and the presentation of symptoms, doctors made an educated guess that Ella-Mae had Stargardt’s disease – a genetic macular degeneration disease that causes central vision loss. Once this diagnosis was made, it was then determined Ella-Mae needed to undergo genetic testing to confirm the diagnosis and rule out any other illnesses.

Several weeks ago, Ella-Mae got her results back with devastating news. Her new diagnosis, based on these results, is called CLN3 Batten disease. This new and shocking diagnosis will require many kinds of doctor appointments and research that will be ongoing. With this neurodegenerative disease, vision loss is the first symptom (around ages 5-10.) Most become fully blind by age 10. Then come seizures, personality and behavioral changes, dementia, cardiac issues, losing the ability to talk and walk, and eventually becoming wheelchair-bound. This is a fatal disease.

As imagined, this has left Alison and her family in shambles. With the copious amounts of doctor’s visits, therapies, and more – Alison and her husband Ryan will need to take time away from work to focus on their family while still juggling all of the appointments that are to come. Alison and her family are fabulous people and it’s our time to rally around them and show them we’re here with support and love. Any donations made to them will go towards the great care and modifications that Ella-Mae will receive.