Hello and welcome to our fundraising page!! Thank you for taking the time to learn about this organization. This is our 6th year joining this cause that is near and dear to our hearts! Please consider donating and joining us. We will host a local event here in Dubuque on September 28 (1 week after the scheduled virtual event) at Valentine Park from 4-6 pm. More details to follow.
What is our story? See below.
After our son Meyer was born in January 2019, we found out that our sweet baby was positive for a rare but deadly genetic disease called X-Linked Adrenoleukodystrophy (ALD). As our pediatrician explained this disease to us, I went numb. Our lives were forever changed by this information. After more testing was done, the disease was indeed confirmed and our 2nd string of bad news was delivered. Our older son, Murray, who was 3 at the time, was also positive for this disease.
ALD is a deadly genetic disease carried on the X chromosome that affects 1 in 18,000 people. The majority of those severely affected are boys and men. Current statistics show that 4/10 boys diagnosed with this disease will develop the cerebral ALD. This brain disorder destroys the myelin or protective sheath wrapped around the neurons. These nerve cells are what allow us to think and control our muscles. Most cases are found in childhood between ages 4-10 years of age when the symptoms progress. Seizures, blindness, deafness, loss of muscle control and progressive dementia leading to death or permanent disability within 2-5 years from diagnosis. Thankfully, ALD was added to the MN newborn screen in February of 2017. Not all families are this lucky. Just by being born, Meyer has already saved his big brothers life. We are now being followed by the best research hospital (The University of Minnesota/U of M) in the world for our boy’s disease. We get routine MRIs every 6 months (14 in total for Murray and 11 for Meyer in the past 6 years!) as well as labs to monitor their adrenal function. If a lesion is picked up on the MRI, the treatment is either a bone marrow transplant or gene therapy to “reboot” their bodies and halt the disease which would lead to a cure. Not without risk though.
In February of 2019, as we met with the team of ALD specialists we asked “what else can we do for our boys?” We want to do everything possible to give them the best chance of survival. To our astonishment they suggested we have another child. I was 1 month postpartum and he wanted us to have another child? How? Why? You might ask. Well, the chances of survival went up 5-10% if you had a sibling that was an HLA match for umbilical cord or bone marrow donation. Which at the U of M meant a 100% success rate. Who wouldn’t want this for their child? So we went down the road of IVF with preimplantation genetic diagnosis. We were about to embark on a journey to create a life to save a life. A month later we were meeting with the IVF doctors. After 2 rounds of egg retrievals, hundreds of shots, labs and doctor’s appointments we got the call that we had ONE embryo that did not have ALD and was a 100% HLA-tissue type match for our boys. On Oct 10, 2019 with the help of the medical team we became pregnant with our 3rd boy - MILLER who is now 5 years old!
Fast forward to today, all I feel now is gratitude. Grateful for those who fought to add ALD to the newborn screen so that we had the knowledge ahead of time to do something if we need to. Grateful for the U of M and all the families we have connected with. We are most of all grateful for our unending team of support that is getting us through this – our family and friends.
But we need your support!!
Unfortunately, with a disease this rare, not a lot of funding has gone into ALD research. There are some very promising research initiatives but simply not enough funds available. The majority of these funds are entirely dependent on charitable donations. Donations are tough to come by with such a rare disease. This is why 6 years ago, we banded together with some other amazing families to start a non-profit organization called X out ALD. This organization is comprised of families who are forever linked to ALD. The more money we can raise, the more research can happen to improve the chances of our boys and others like them. The medical team has very promising ideas to pursue but the research must be conducted to get actionable results. We intend to help be a piece of that solution. We’d love it if you wanted to help as well.
Every donation/share counts! Thank you!
Love, the McAnelly Family
