Avleigh's Journey

I can remember the day we received Avleigh’s diagnosis like it was yesterday. One statement that was made stuck with me… “I’m sorry for your loss”. In other words they were telling us there was nothing they can do for her. There are no cures and no treatments. Just a matter of managing symptoms. I don’t know about you but for me that was a hit in the gut. I refused to accept that and continued along this journey doing all I can to find new resources to give us any bit of information to help improve her life. I am still looking for more answers and spreading awareness of her disease in hopes that crosses the right person to give us a miracle.

I’ve crossed paths with another PCH mom that has found a miracle for her little warrior! This family pursued stem cell treatments and have seen lots of improvement in their little girl. She is now off of her feeding tube, able to walk and speak a few words. The situation is a bit different from Avleigh as she has a different type of PCH and a different severity level. When I first read about this my first though was no way it could work for Av. Although I had many doubts, I reached out to the doctor that performed the stem cell treatments. He indicated that they have treated various children with cerebellum issues with a majority of them showing great improvement. Avleigh’s case is obviously different due to the genetic aspect, but there have also been anecdotal stories of genetic issues being treated with stem cells which improvements have been shown. Given that there are no options available to treat Avleigh’s condition, he said that it could be work it to try a treatment. My first thought… omg my baby could be fixed! A few days pass and it feels just too good to be true. I’m now pulling myself off of cloud 9 and doing my research to see exactly what this could mean for her.

The treatments consists of infusing millions of healthy donor stem cells followed up by extensive therapy to the area of concentration. Her medical history will be evaluated to determine the best possible outcome for improving her quality of life. This could be feeding, mobility or seizures.

We’ve reached out to all her team and waiting on some more information from genetics and hematology. Most of her specialists do not have enough information to give an opinion on the treatment, but are still in support of giving it a try. If genetics and hematology is also onboard then we will be looking into raising funds to get her to this doctor and give the treatment a try! This is a big gamble, money wise, as the treatment could do nothing at all. As a mom with hope to fix her baby, I feel like we have to at least give it a try as long as there are no negative impacts.