Kammron Myles looks and acts like a normal baby.
On a recent Tuesday morning, the curly-haired, sturdy 10-month-old with the big brown eyes smiles and reaches for a toy truck on the floor in his aunt’s home in Groveland Township as sunshine streams in through a window. There are no signs that anything is wrong. But something is wrong? very, very wrong.
Kammron needs a bone marrow transplant, and he needs it soon. Without it he will die, likely before the age of 2.
Heather Jones, a 1991 Brandon High School graduate and mom of Kammron, picks up her son and cuddles him before setting the squirmy baby down again. She and Kammron’s dad, Derrick Myles, welcomed their first child into the world on June 7, never imagining the struggle the family would face.
When Kammron was 2-weeks-old, he appeared to have severe eczema, a skin condition. At 6-weeks-old, he was admitted to the hospital with a staph infection due to the eczema. It was the first of five hospital stays before he was 6-months-old. At the 6-month mark, a baby’s immune system takes over, but Kammron weighed only 14 pounds.
‘He was skin and bones and malnourished,? recalled Jones. ‘He was very lethargic and doctors diagnosed him as failure to thrive. We didn’t know for sure what was wrong.?
Kammron’s parents took him to a gastroenterologist at Beaumont Hospital in Royal Oak. The doctor did a biopsy of Kammron’s esophagus, stomach and upper intestines. The baby was in the hospital from Jan. 22-Feb. 16.
On Feb. 29, after waiting two months to receive the results of a genetic test, doctors gave the heart-breaking news: Kammron has immunodysregulation polyendocrinopathy enteropathy X-linked (IPEX) syndrome, a rare immunodeficiency disease in which a genetic defect makes cells attack the body rather than foreign microbes. Kammron’s immune system is essentially overactive and eventually, his immune system will attack his own organs. The disease is fatal by the age of 2 or 3 without a bone marrow transplant.
‘Thank God my mom was with me when they diagnosed him,? Jones said. ‘It was very hard to swallow. I took a day where I was crying and couldn’t see any positives, and then decided to do research and try to find a fix for it.?
The family went to Cincinnati Children’s Hospital April 2-3 and they confirmed the diagnosis and did more testing. Because Kammron’s FOXP-3 gene does not work at all, he has to have a bone marrow transplant.
A search of national and international bone marrow registries has already been conducted. Out of approximately 10 million people registered, Kammron has two possibilities and neither is a perfect match? each potential donor matches six out of eight blood proteins with Kammron. The baby has an additional challenge in finding a perfect match? he is bi-racial.
‘There is a huge need for ethnic donors,? Jones said. ‘My proteins are difficult to find being European and Derrick’s are difficult because they’re African-American.?
Currently, Kammron has no endocrine involvement, meaning that his immune system has not yet attacked his pancreas and thyroid, damage that would be irreversible. The baby has been stabilized on cyclosporin, antibiotics, and takes a vitamin D supplement and oral steroid. His blood is drawn twice a week
‘He cries and cries and cries when they pin him down for a blood draw, but as soon as I pick him up, he smiles and laughs, so he doesn’t hold a grudge,? Jones said, smiling as Kammron crawls into her lap.
If Kammron’s organs start to become affected and a perfect match has not been found, a bone marrow transplant could be performed with one of the donors who match 6 of 8 proteins; however, there is a higher chance of rejection and more chance of graft versus host disease, another form of the new immune system attacking the body.
During the campaign, joining the registry is free and can be done with a cheek swab and no blood draw.
‘No personal information is published, you become a bar code,? Jones said. ‘If you’re a possible match for someone, they will call you for further testing.?
When it is time for a bone marrow transplant for Kammron, his family will have to live in Cincinnati for six months. The family is already facing financial hardship. Derrick Myles works for General Motors and they have medical insurance. However, Jones, who also is employed by GM, has been on sick leave since December to care for Kammron. Their son’s special formula is expensive and costs about $600 per month. When they go to Ohio, the transplant will be paid for as a life-saving operation, but travel and lodging will not be covered.
A road rally fundraiser is planned for June 1 beginning at MacPhee’s Restaurant, 650 S. Ortonville Road. Time has not yet been determined, but it will start in the afternoon. Cost is $100 per couple and includes dinner. Cost for a group of four is $150. There will also be raffles and a silent auction.
Jones picks up Kammron as he reaches into a diaper bag and pulls out medication. He babbles at her and is easily distracted with a toy.
‘My hope is that Kammron gets to live a long, happy and healthy life,? Jones says and kisses her son’s cheek. ‘I say he’ll be an IPEX doctor. His daddy says he’ll be a football player. We just need to find a donor, and the sooner, the better.?