Asher Brockhouse is a fighter.
That’s how Alicia Brockhouse describes her one-year-old son who was diagnosed with Maple Syrup Urine Disease at just seven days old.
The rare condition is an inherited disorder in which the body is unable to process certain protein building blocks, like amino acids, properly. The disease becomes most apparent soon after birth, with symptoms that include poor feeding, vomiting and lack of energy.
Asher’s parents, Alicia and Brett, who live in South Jacksonville and have ties to Jacksonville and Virginia, sought medical advice after their son exhibited some of these behaviors.
Weeks into his life, Asher spent 18 days in the hospital receiving treatment and tests for Maple Syrup Urine Disease.
After his release from the hospital, Alicia and Brett began the daily task of managing Asher’s diet and leucine status, an amino acid vital in assisting muscular health.
“I work closely with a metabolic dietician from St. Louis. We do weekly blood draws and she basically calculates what his dietary requirements are. He has this special formula that a metabolic company makes, “says Alicia.
But months later, after what initially appeared to be a common stomach bug, Asher had another complication that spiraled out of control.
“We came to the hospital and his leucine was 1,000 upon arrival, which is about 800 above the normal limit of an average person. After that he ended up with a blood infection and went into cardiac arrest. Once they got him stabilized his lungs collapsed and he had to go on a cardiac bypass machine. He had to do a decompressive laparotomy because his liver was so enlarged. We have been working with him and trying to get him back to normal since he did go into cardiac arrest.”
Alicia is amazed at the strength her one-year-old son has displayed.
“Honestly I think the doctors are surprised he is here, which makes you realize how lucky you are. He is a fighter and has been since day one. When we were initially hospitalized with his MSUD, his leucine level was 4,300. Normal leucine is 50 to 200. For him to be here is pretty amazing. Then to go through this is again…he is a fighter… you can say that.”
Alicia acknowledged that her son still has a long road ahead, with physical and feeding therapy in the future for Asher.
Alicia says the only cure for Maple Syrup Urine Disease is a liver transplant. The liver is the only organ that has the enzymes to process isoleucine and baleen. Alicia is hopeful Asher can receive a liver transplant, but he must be completely healthy with no infection.
Alicia was happy to announce that Asher was recently moved out of the Pediatric Intensive Care Unit at the St. Louis Children’s Hospital.
With Asher, Alicia and Brett being in and out of hospitals over the past year, times have been tough. Alicia thanked her family and friends in the community for everything they have done.
Anyone who would like to support Asher is invited to a special event at Nichols Park Golf Course on September 11th. Fighting the Fairways for Asher will feature Crossfit-themed workouts and live entertainment.
For more information check out the Fighting the Fairways for Asher Facebook page.