Jacob and I have been through some difficult days in our relationship; many through years of infertility, and his cancer diagnosis during my pregnancy... but those pale in comparison to the day our son, Chip, was diagnosed with Batten Disease (CLN3).

Our Story

We tried getting pregnant for around seven years, working with two different infertility specialists off and on, but never finished that process due to financial reasons. In December 2019, we went to our third infertility specialist with the intention of finishing that journey, no matter the cost. At that appointment, the doctor ran several different tests, including genetic testing for both of us. A couple of weeks later, we discovered we had conceived naturally… a miracle!

Though we wouldn’t need infertility treatments, the doctor still let us know that the results of our genetic tests determined we were both carriers of CLN3 Batten Disease. We declined to have Chip tested invitro, because he was our miracle baby and nothing was going to change our decision to have him. At birth, we requested that his pediatrician test his cord blood to see if he was affected by this devastating disease. We were so relieved when we were told his test was negative.

However, by August 2025, we started having concerns about Chip’s vision. Several people in his life were voicing similar concerns to us independently of each other. When we addressed it at his 5-year-old well visit, we were once again repeatedly reassured that he tested negative at birth. Still, we had our doubts, so we decided to take him to the optometrist to address our concerns more specifically.

That appointment was November 11, 2025: the day our whole world came crashing down. The optometrist explained that he had lost his central vision, and when we explained our carrier status, he felt confident that’s what it was. That same night, we reached out to an independent genetic counseling/testing service that was able to confirm that the test ordered at birth, a chromosomal array, wasn’t in-depth enough to catch the specific genetic deletion that causes this disease. When we retested him with the appropriate test, it confirmed he was in fact positive for CLN3 Batten Disease.

CLN3

Batten disease is a rare genetic disorder of the nervous system that typically appears between the ages of 4 and 7 years old, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of sight and motor skills. Batten disease is often fatal by the late teens to mid twenties. There is currently no cure for this disease; typically, treatment includes managing symptoms as they progress, through medications and/or occupational and physical therapy.

As grim as the prognosis is, we are hopeful. There are doctors and researchers actively researching treatment options, and God-willing, a cure. Our biggest hope is that we still have time. We have been focusing on the idea that Chip was born for such a time as this; that our years of infertility were God’s way of saving him for a time when science would discover the ability to change his life in the most miraculous ways, because only He knew what we would face.

Our main “treatment option” right now for his vision loss is a medication, being prescribed by a neurologist in Houston, to help slow the progression of the disease itself; it is very expensive and very difficult to get insurance to cover since it’s being used off-label. We’ve already seen that doctor, gotten the prescription, and started the battle with insurance, which could take months. As you can imagine, every day is critical as we have already seen more visual changes since his diagnosis just a few weeks ago.

In order to prevent further decline, we would like to go ahead and get him going on it until insurance can step in. At the time of writing this, the out-of-pocket cost quoted to me from two different pharmacies this week was over $28,000.00 for one month supply. A whole car! Even with a coupon, we’re still looking at roughly $7,000.00 a month until insurance will agree to cover it, assuming the coupons will continue. Additionally, insurance reviews this decision annually (and of course, if we ever change jobs/insurance providers) so there’s the potential for some lapse in coverage down the road that could lead to interruptions in his treatment without adequate funds available.

Beyond that, we have no idea what other additional expenses we will have in the future, but our hope is to be able to provide Chip with the best possible medical care no matter what, because he deserves it.

Chip, Our Miracle Boy

I often tell Chip, “you have SO many people that love you!” So much so, that he’s started saying it back to us. He is so smart and has an amazing sense of humor for a five-year-old. He loves monster trucks, construction vehicles, tractors, being outside, playing baseball, his friends, his family, and God!

He gets so excited about colorful things, which is something that’s been difficult to swallow, knowing he may eventually be unable to see them. He is so full of life that it’s extremely difficult to imagine the toll this disease may take on him; but for now, we’re doing our best to take this one day at a time, keep him happy, and hope that God is working out a different outcome for him.

Final Notes

Most importantly, we have not told Chip anything. We have not discussed his diagnosis in any capacity with him, and even the appointment in Houston was very vague in his presence. At his age, that’s just what we feel is appropriate for now.

Please know that this is WAY outside of our comfort zone. Even through Jacob’s cancer diagnosis, we never asked for financial assistance. We know how expensive this world is, so we genuinely hate asking for help; but when it comes down to the health and wellbeing of our child, we’ll do just about anything.

So, if you feel led to do so, please consider donating to help us fight for our son. If you can’t, please pray for us, and pray for a cure daily. We have already seen God moving mountains for us and we know it’s because he’s hearing Chip’s name quite a bit these days. Either way, we appreciate your love and support from the bottom of our hearts!

***Please Note***

GoFundMe takes a small portion of your donation, so if you would like to avoid that on a larger donation, please contact us directly.

We have set up a separate account for this at our bank, so if you’re local and would like that information as well, please let us know.

If you feel more comfortable donating to a Venmo account, please use: @JacobChambers (4668).