Tucker Haggith of Six Nations is just a year old and is living with the effects of Hirschsprung disease which bars him from living a normal life — but there is hope.
SIX NATIONS — After finding out that their son Tucker was born with the congenial condition known as Hirschsprung disease, both Timarah and Kyle Haggith were quick to want to find a treatment.
And they did.
The parents plan to take Tucker to Nationwide Children’s Hospital in Columbus, Ohio in July for an evaluation and hopefully the surgery that will offer him more of a normal life. But with the decision to go to a specialist in Hirschsprung disease for the best treatment possible, the parents have been prompted to realize that they will have to pay the medical costs as none can be covered by OHIP in the U.S..
And the duo are determined to do so through fundraising efforts that have been ongoing. In regards to what Hirschsprung disease is, his mother was quick to explain as she hopes that more people will become aware.
“It’s a birth defect that affects the ganglion cells in the bowel and no case is the same,” said Haggith.
She explained that Hirschsprung disease is a condition that is present at birth and affects the large intestine and causes problems with passing stool. The condition is caused as a result of missing nerve cells in the muscles of the baby’s colon and surgery to bypass or remove the diseased part of the colon is the treatment.
“For the first eight months of his life he was in and out of the hospital,” she said. “He had three surgeries and he’s had about four infections and we have to really be sterile at our home and be careful of who we let in to our home because if he even gets a common cold he gets really sick and it throws him right off. And we always have to keep him hydrated and he can’t gain weight as quickly as other children, or go swimming like other children.”
But Tucker is one tough boy.
Within 24 hours of Tuckers birth at McMaster Children’s Hospital, doctors noticed that he had stopped eating, began vomiting and his stomach was severely distended. He was quickly diagnosed with Hirschsprung disease.
After weighing just 11 pounds at four months old and three bouts of enterocolitis which is an inflammation of the digestive tract caused by infection, doctors opted to perform a ileostomy which is a surgical opening or stoma to allow his intestinal waste to pass to an external pouch attached on the outside of his stomach — rather than perform a surgery to remove seven inches of his large intestine.
Three months later, he was hospitalized again with the flu which caused another round of enterocolitis and when he was put through surgery to fix the stoma, doctors found that his bowel was full of ulcers.
Despite the medical issues, Tucker is starting to learn how to walk and talk But Haggith said that she believes it is still affecting his life in a way that they would like to see remedied.
“He can’t do things that a normal one year old child should be able to do,” she said. “He can’t go play in a sprinkler, he can’t go swimming, when he wakes up in the morning and if he lays on his stomach the output bag explodes, and if he crawls we can’t let him go shirtless because he’ll rip off the output bag.”
She further explained that Tuckers stomach has also become like a diaper rash, and it is the first thing she can’t wait to see healed as the fundraising is still continuing.
“The fundraising has been going really good and we’ve had a lot of support from our community and surrounding communities,” she said. “We are just so thankful.”
Tuckers father explained that he is both “nervous and excited,” for the surgery as he believes that they will inevitably reach their goal in providing their son with the best care possible with the amount of support that they’ve garnered already.
“Tucker has just had a rough year and he deserves all of the best,” he said. “We’ve had tons and tons of help and everybody around us whether they be from Six Nations or Brantford, has been pitching in. Even family and friends; everyone is just on board to get this disease fixed.
Everything has just been going beyond our expectations and there is no doubt in our minds that we’ll be able to reach our goal and get him the surgery he needs.”
If you would like to help:
Help the Kids Organization and Sandusk Golf Course are set to host a golf tournament on Saturday, June 16 at 11 a.m., with an entry fee of $125 and a free cart and meal with all proceeds going to Tuckers expenses.
While a Tribute Stars Shine Fundraising Event will also be hosted to help raise funds for Tucker on Saturday, June 23, at the Branch 90 Legion on 21 Oak St. Brantford with doors opening at 7 p.m., and $10 tickets or $15 admission.