“We are so grateful and touched to receive the outpouring of support from our family, friends and community. We are proud to raise our son in a place like Jacksonville and we want to say Thank You from the bottom of our hearts!” ~the family of Asher Brockhouse
The local community is rallying around Asher Brockhouse. The one-year-old son of Brett and Alicia Brockhouse, Asher has been at Barnes Jewish Hospital approximately 50 days. Fifty days … fifty of the longest days for his family. Asher was born with MSUD (maple syrup urine disease). The name of the disease seems unreal; however, the disease is fierce. MSUD is rare. It is a “disorder characterized by deficiency of certain enzymes (branched-chain alpha-keto acid dehydrogenase complex) required to breakdown (metabolize) specific amino acids in the body,” according to the National Organization for Rare Disorders.
Asher was diagnosed at only seven days old. That day, the family answered a heart-wrenching call from the pediatrician’s office explaining they would receive a call from St. Louis Children’s Hospital soon because they feared he had MSUD. According to his mother, Alicia Brockhouse, “We received the phone call and left for St. Louis. They performed blood work and kept us overnight. The next morning when the results came in, PICU Rapid Response was called and he was rushed to the Pediatric Intensive Care Unit (PICU).” Within two hours, he was sedated, incubated and receiving high quantities of glucose and calories. The next five days were spent in PICU attempting to get his leucine level down. A gastrostomy button (or G–button) was placed in Asher at that time to assist with future care. The Brockhouse family had a new normal, which involved managing and monitoring his leucine levels. It’s difficult to fathom how such news could destroy any inkling of composure and immediately swarm minds with racing, doleful thoughts. A small, innocent infant is starting his life fighting. His family is dealing with medical terminology foreign to them and with the added difficulty of living out of their child’s hospital room.
Leucine is suspected to be the only amino acid that can stimulate muscle growth, and can also help prevent the deterioration of muscle with age. Foods high in leucine include cheese, soybeans, beef, chicken, pork, nuts, seeds, fish, seafood and beans. Normal leucine level is from 50 to 205. At the time of diagnosis, Asher’s level was 4,300. The only treatment for MSUD is a leucine-restricted diet. Since the diagnosis, Asher has weekly blood draws and his “recipe” is adjusted based on the results. The family works with a dietician from St. Louis; she calculates his daily allowance of leucine and calorie requirements. He must eat his entire “recipe” everyday and any solid foods. If he does not orally finish his daily recipe, they must utilize the G-button and feeding pump in order to keep him stable. They work with a dietician on a regular basis to keep these numbers correct.
Since turning six months, his leucine must be calculated based on his solid food intake. He is currently allowed 140 mg leucine from solids a day. His parents utilize a gram scale to methodically measure the amount of food he is allowed. Asher is not in a place where he can motion to Mom when he’s hungry and cry simply because of hunger. The little guy’s feedings aren’t every couple of hours like most children his age. His “meals” are the recipe of a measured amount of special MSUD formula and regular baby formula. Amino acids are provided to Asher as well, to combat the leucine.
His most recent hospitalization started out as a “typical” MSUD hospitalization since Asher had a stomach bug and was vomiting. As the days progressed Asher’s condition worsened and he ended up with a blood infection and an enlarged liver. The enlarged liver caused too much pressure on his lungs and heart. This pushed him into cardiac arrest. A laparotomy, or large incision into the abdominal wall, was performed on this faultless, small body in order to give him more room to expand his lungs. Once he was stabilized, he was on an oscillator machine. The oscillator keeps his lung open and administers short bursts of air that make it hard to suction the mucus from his lungs. Because of this, Asher’s lungs collapsed and he was placed on ECMO. Extracorporeal membrane oxygenation, or ECMO, is a cardiopulmonary bypass technique that generally provides long-term breathing and heart support. Two days later, he could be taken off ECMO! In a needed triumph for Asher and his family, the surgeons were able to close his abdomen once the swelling had subsided.
The extended stay in the hospital had friends and family reaching out to come up with ways to help the Brockhouse family pay their bills. A quick scan of social media shows a trunk show, a CrossFit competition golf outing as a few of the options available to support this family. The overwhelming number of such sweet and authentic acts of love for a child is uplifting and rewarding. Charlie’s 19th Hole and the Links Golf Course teamed with many of the Brockhouse (Chappell) family friends to host a golf outing. The event, which is full for golfing, will also host a band and an auction on the evening of the September 11. There will be food available for purchase (Burgoo and hot dogs). Additionally, friends from the gym that the Brockhouses attend are hosting a CrossFit event at the same time, at the public golf course at Nichols Park. The CrossFit event starts at 10:30 a.m. and pre-registration is not required. Food service starts at noon and the auction and the band Exit 52 starts at 5 p.m.
Duncan & Hoots Jewelry in Jacksonville offered another option for those wanting to help. Joyce Hembrough donated a white gold cushion-cut blue topaz and diamond pava pendant, retailing for $1,100 and offered it as a Facebook auction item. Lindsay (Burgess) Stiltz and Mark Stiltz bid in a Facebook auction of a necklace donated by The necklace is stunning; however, the most beautiful part of the auction is that the top bidder by auction’s close at noon on August 12 would be writing a check to the Asher Brockhouse benefit. Hembrough says, “It came down to several people in a bidding war to support (Asher). It was great.”
The check written by the Stiltz family is just money. The necklace and so many other items donated are just money. The outpouring of fundraising events is simply time and money. Your prayers given to Asher or any child in need are great gifts. These are all exemplary moments of giving deserving of merit. Notwithstanding, this is about a life. This is about love for Asher – a kiddo who is fighting. Insurance covers only so much … hospital bills are “just money,” too, but they add up quickly along with the many incidentals occurring during this time for the Brockhouse family.
Giving for an innocent child in need is a virtuous offering to bestow. This is all being done for the love of a child – for the love of Asher. All are invited to the fundraisers on Sunday, September 11.