ABCA3 disease is a condition that affects the lungs, especially in babies and young children. It's caused by a change in a gene called ABCA3, which makes a protein that's important for helping the lungs work properly.

ABCA3-related lung disease in infants can be deadly because the condition affects the production of surfactant, a crucial substance that helps the lungs function properly. Surfactant keeps the tiny air sacs (alveoli) in the lungs open, making it easier for the infant to breathe and absorb oxygen.

In babies with ABCA3 mutations, the protein responsible for producing and transporting surfactant doesn't work correctly. Without enough surfactant, the lungs cannot function properly, and this leads to severe breathing difficulties.

Here's why it's so dangerous:

While the situation is incredibly challenging, researchers are working hard to find new treatments, and gene therapies like AAV therapy hold promise for providing a cure in the future. However, for now, the disease remains one of the most difficult and deadly lung conditions for infants.

The Wylder & Oakley Foundation is working closely with the research team to find a cure for our boys and, ultimately, for every child affected by ABCA3.

Our mission is to find a cure for our beautiful twin boys. The uncertainty of their survival and how much time they have left has driven us not only to find a cure for them but also for every child and person living with this disease. The funds we raise will go towards research for a cure, raising awareness, and helping other families affected by ABCA3.

The scientists and doctors we're closely working with (Dr.Bernard Thébaud & Dr.Sarah Wootton) have recently found success in an AAV gene therapy in mice with ABCA3. This may be promising news in the future with the right funding.

Children with ABCA3-related diseases, especially those with interstitial lung disease, face significant challenges. The most immediate symptom is severe difficulty breathing, which can be life-threatening. In many cases, babies with ABCA3 mutations develop respiratory distress right after birth due to insufficient surfactant in their lungs. Over time, this leads to lung damage and scarring, making it even harder to breathe.

Unfortunately, many children with this condition don't survive past their first year. For those who do, the most common treatments—such as lung transplants or tracheostomies—are highly invasive and experimental. While these procedures can prolong life, they don't offer a cure, and they come with their own set of risks and challenges.

Our foundation is dedicated to finding a cure for ABCA3-related diseases. One of the key ways we are funding research is by supporting the development of AAV (Adeno-Associated Virus) therapy, which holds promise as a potential cure for this disease. This therapy aims to correct the genetic mutation in the ABCA3 gene, potentially providing a long-term solution to the condition.

We are actively raising funds to support this critical research and help make a cure a reality, not only for our boys but for every child affected by ABCA3.

You can make a difference by sharing Wylder & Oakley's story and raising awareness about ABCA3. The more people who know about this condition, the more support we can gather to fund research and find a cure. Your donations are vital—every penny goes directly toward funding the search for a cure and helping affected families. Remember, sharing is caring, and together, we can help make a change.

Right now, we have a GoFundMe campaign where you can donate directly to support our cause. For corporations or individuals who would like to receive a tax receipt, we also accept donations directly to the foundation. Every contribution helps us move closer to finding a cure and helping those affected by ABCA3. Thank you for your generosity!

I have a child diagnosed with ABCA3. Where can I find support?

If your child has been diagnosed with ABCA3, you're not alone. For support, we recommend reaching out to some of the doctors listed on our page, who have been an incredible help to us with information, potential treatments, and guidance. Additionally, feel free to message us directly—we're here to offer support and will do everything we can to help you and your family during this challenging time.

To stay updated on the foundation's progress, we will be providing regular updates on our GoFundMe page, as well as on our website, Instagram, and Facebook pages. Be sure to check both for the latest news, research developments, and how your support is helping us move closer to a cure.