Jackson Merriman of Highland Village is a growing two-year-old boy who loves trains and cars, has a loving spirit, and has seen more physicians in his two years than most adults will see in a lifetime.
When he was only nine-months-old, he was diagnosed with a genetic-based immune deficiency in combination with a second condition so rare that he’s only the 13th case in the United States.
“He’s been sort of like a ‘boy in a bubble’ since he was diagnosed,” said Doug Merriman, Jackson’s father. “We don’t take him out to Wal-Mart, restaurants or even church and if friends or relatives have any sickness in their family, they can’t come in our house because any illness could be fatal to Jackson with his lack of an immune system.”
The relationship between primary immune deficiency and mutated genes affects thousands of people in the United States. Jackson, however, was diagnosed with the potentially fatal Hypohydrotrotic Ectodermal Dysphasia (HED) with NEMO immune deficiency.
A person with HED has poorly developed sweat glands, hair follicles, and conical-shaped teeth caused by the NEMO gene mutation. The NEMO gene (an acronym for the DNA sequence NF-kB Essential Modulator) essentially is a cell switch that sends instructions from the nucleus to different parts of a cell. Jackson’s instructions don’t reach the correct destination.
The toddler’s early diagnosis at nine months was the result of medical tests prior to three brain surgeries for a MRSA (methicillin-resistant Staphylococcus aureus) infection, which is a drug-resistant strain of the more common variety of “staph” infection.
MRSA infections which occur in hospitals or other health care settings are known as health care-associated MRSA, or HA-MRSA. Older adults and people with weakened immune systems are at most risk of HA-MRSA.
Luckily, Jackson developed no scar tissue on his brain from the surgeries, but his family’s trial began.
“Every Sunday we have to give Jackson an infusion that takes two hours to create a temporary immune system,” said Merriman.
A Bone Marrow Transplant (BMT) is the only possible cure for Jackson’s NEMO which could give him a healthy immune system. There is no cure for HED which affects teeth, skin, hair, nails, and sweat glands, so his medical care will continue for his lifetime.
Luckily, a BMT donor match for Jackson has been found in Denver, Colo., and the two weeks of check-up procedures began on March 22, prior to his nine days of chemotherapy (starting on April 12) that’s required before his transplant.
“What’s really amazing is that I just got a notification up here [Denver] that I’m a potential BMT match for someone else,” said Merriman. “That’s why it’s so important that people register to be donors. Someone was a match for my son to help save his life and I might be a match to save someone else.”
The Merriman family may need to stay in Denver for as long as four to six months.
“I’m very blessed to work for BMW in Dallas as a mechanic and they’ve been so understanding and supportive,” Merriman said.
Even with support and past fundraisers, there’s a $1 million cap on Jackson’s insurance policy and the current price tag is already about $500,000 before the BMT, which can cost hundreds of thousands of dollars. The family will be put into the Texas High Risk Insurance Pool when their insurance runs out and the premiums will be costly.
To help Jackson’s parents handle their son’s mounting medical financial needs, Cloud 9 Salon in Flower Mound held a fundraiser on March 27.
Links for more information on donating or events: a tax-deductible donation (any amount over $50) through Children’s Organ Transplant Association, COTA, www.cota.com or http://cota.donorpages.com/PatientOnlineDonation/COTAforJacksonM/
There is also a checking account at Bank of America in Jackson ’s name (not tax deductible acct). Routing #111000025 and account #488026289498.
For prayer updates when he goes to Colorado for his BMT, visit his Caring Bridge site is: www.caringbridge.org/visit/jacksonmerriman
For opportunities to help volunteer or questions: email [email protected]