Pasadena Baby Battles Rare Genetic Disorder
Local Mom On Mission To Promote National Bone Marrow Registry
Story And Photo By Ashlea Browning
For Kathleen and Tommy Miller, raising awareness for the serious illness of their 1-year-old son, Jackson, is no easy task. There are no pink ribbons or yellow bracelets adorning the cause, nor are there any widespread walks or runs in support of it. There are only 23 other people nationwide known to suffer from X-Linked Lymphoproliferative Disease, or XLP2, the extremely rare immune disorder that burdens Jackson.
Jacksons first year of life was not at all what his parents had envisioned. The fevers began at just 11 weeks old, and Jackson was officially diagnosed with XLP2 after four grueling months of testing and waiting. While it is an extremely aggressive and potentially fatal disorder, it can actually be cured from a bone-marrow transplant in most patients.
Sadly, doctors were unable to find a complete bone-marrow match for Jackson. They decided to try an experimental transplant option called a haplo, where the donor is only half-matched to the recipient. Parents are always at least half-matched to their children, so after some testing, it was decided Tommy would be the donor.
Kathleen, who is consistently asked how they are able to get by and be so strong, explains there is one quote that has stuck with her throughout their journey Being strong isn't something you choose to do. It's something are you forced to do when being weak isn't an option.
I firmly believe God doesn't give us more than we can handle and I know Jackson was given to us for a reason. We can't be weak when he needs us the most. It's just not possible, she explained.
The Pasadena family recently had to move into a temporary apartment in the city to be close to Johns Hopkins Childrens Center, so Jackson could be quickly transported to the hospital when necessary. For 100 days following the transplant, Jackson must go to the clinic three days a week. Both Kathleen and Tommy have gone from full-time jobs to part-time jobs so they could care for Jackson.
He has spent more time in the hospital than he has at home, Kathleen said. Since his diagnosis, they have shared almost every holiday - including his first birthday - within the hospital walls. Finally, after eight weeks of chemotherapy, Jackson received his bone-marrow transplant on March 14 from his father.
It's amazing how this process works when you really think about it, said Kathleen. They are taking bone marrow from someone and putting it in someone else to cure their fatal illness. In our case, my husband is giving new life to our son.
The couple has been urging as many people as possible to register to become donors since Jackson was unable to find a match. Kathleen has been on a mission to raise awareness and get people to join the bone-marrow registry. She strives to eliminate any misconceptions about the process, especially the belief it is painful and involves invasive surgery. The majority of donations are taken from blood stem cells, and do not require surgery. Even in surgical situations, donors are usually able to go home the same day.
You could save someone's life and it doesn't cost you anything except some soreness for a few days, said Kathleen. About 10,000 people are currently waiting for a bone-marrow transplant and only half will get them. This is a horrible statistic we have the power to change, Kathleen explained. I can't express how important this is to all those out there waiting for a match like Jackson.
Considering all of their struggles, it can be difficult to imagine what its actually like for first-time parents Kathleen and Tommy. Many who have read their story stare at the words in awe and wonder how they manage to do it. The couple insists it is all thanks to Jackson, though.
Even in his worst, absolute rock bottom, he has always had a smile on his face, said Tommy. Thats enough to give us faith and hope.
To follow Jacksons Journey, as told by his mom Kathleen, visit www.caringbridge.org/visit/jacksontmiller. Most importantly, help all the little Jacksons out there by registering to be a bone-marrow donor. The kit comes to your house, you swab your cheek then send it back. It's that simple, Kathleen urged. Visit www.bethematch.org to sign up today.
You may order a blue "Bands for Buds" bracelet to help and show support by logging onto the above website.