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Levi Coleman is a boy who never eats
A Taranaki Family's Plea For Life-Changing Treatment:
Being Tube-Free Would Change Levi’s Life Enormously:
Levi Coleman is a boy who never eats. After suffering years of excruciating stomach pain, it took so long to diagnose a rare bowel disorder, the 4-year-old is so fearful of food that he shuns it completely. Nothing passes his lips, not even a slice of birthday cake. It’s an issue his parents, Victoria Coleman and her husband Tim, are determined to solve, but it’s a battle they can’t take on alone. "It’s not going to happen for us or for him if we don’t keep trying," Coleman said.
Health issues started to emerge soon after Levi was born. At a few days old, he was diagnosed with Down syndrome and Hirschsprung’s disease, which occur when a baby’s intestinal nerve cells don’t develop properly. They weaned him off the feeding tube inserted at the hospital when he was eight weeks old, The Coleman family noticed their son continued to regularly vomit or look very uncomfortable after feeding.
Coleman’s ongoing attempts to get answers through the health system went nowhere. "It was a whole cycle of awfulness, really." In the meantime, Coleman said she spent hours every day trying to spoon-feed her son as a way to get nutrition into him. But Levi’s stomach couldn’t empty or digest food, and just before he turned three, the young boy started to refuse food altogether. Despite not having a diagnosis for what was ailing Levi, some relief came in the form of a Mickey button, which was inserted into his stomach, allowing for liquid nutrition, water, and medicines to be pumped in via a tube.
Finally, it was identified that Levi had duodenal atresia, which causes a blockage between the duodenum and intestine, and was surgically fixed the following month. Coleman said she had only been able to find 11 cases reported worldwide of people who had been diagnosed with both Hirschsprung’s and duodenal atresia, and the amount of time it took to remedy the latter condition had left the family with the next battle on their hands.
Levi Coleman is a boy who never eats
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"What we’re left with now is a child that’s tube dependent for psychological reasons." Through her own online investigations, Coleman found German doctor Markus Wilken, who is a leading expert in helping wean children off tube feeding. "He’s weaned hundreds of children from all over the world." She said Levi has been accepted for treatment, which will probably begin with virtual consultations prior to Dr. Wilken and a colleague coming to New Plymouth. "And that is not cheap."
This will require the couple to fund flights, accommodations, fees, and other expenses, in their effort to get their son eating again. As a means of raising the $65,000 needed, the family has set up a Givealittle page. Despite the stressful challenges, Coleman said being tube-free would change Levi’s life enormously. "It will provide him with the independence and freedom every child should be able to enjoy." Coleman also hoped that if Levi, who is non-verbal, was able to eat normally again, it would build the muscles in his mouth needed to aid communication.
The impact of the health ordeal had been "massive" on the Colemans, who also have a 2-year-old daughter, Millie. "It nearly broke us completely." Victoria said she felt embarrassed at times as she struggled to explain her son’s condition, but had found support through Rare Disorders NZ. It is Rare Disorders Awareness Month in New Zealand, where 6% of the population lives with a condition that affects less than one person in every 2000. Of those diagnosed with a rare disorder, 72% were genetic in origin, 50% of those affected were children, and 95% of conditions had no approved drug treatment. Coleman has also set up a Facebook support group for other families in New Zealand affected by Hirschsprung’s disease.
