David Thompson Secondary School Grade 12 student Chantel Borho is trying to raise as much awareness as she possibly can for Menkes disease, a rare but terminal illness where children can’t absorb copper through food. Copper is essential in all areas of development, especially the brain, so without it a person’s life is shortened and they face some tough challenges.
The reason Chantel wants to raise awareness for Menkes is because of her three-year-old cousin Max Warbrick who was diagnosed with it when he was a baby. When he was just a couple months old, Max’s family noticed he wasn’t hitting the milestones that he was supposed to. He wasn’t able to do the things that other babies could do and if he was able to, he would only be able to do them for a short period of time. He also began to have seizures. It was confirmed that Max had Menkes disease when doctors took a sample of his hair — it was very thick, which is very common for kids with Menkes.
Max is unable to walk, talk, or swallow properly. On a daily basis, he will choke on his saliva and it has to be suctioned out or else he will breathe in his phlegm, which causes pneumonia.
He also gets fed through a tube that goes to his stomach.
“(Food) is all strictly tube fed,” said Max’s mother, Laura Palmer. “Max can’t swallow food properly; everything would just go into his lungs.”
His two cousins, Chantel and her older sister Shanay, are a big help when it comes to feeding him, as well as getting him his medication and entertaining him.
There are challenges that Max and his family face every day — his illness has changed his family’s life forever.
“It’s a hard thing to accept,” Laura said. “There are lots of struggles along the way. It’s hard because it’s a terminal disease and there is no cure.”
“On a more positive not though, we don’t take anything for granted anymore. Every moment is precious.”
Already, in his three years of life, Max has almost passed away twice. The first time was when he first lost the ability to swallow, and the second time was when he had a massive seizure and went through respiratory distress.
“We didn’t think he was going to make it through, but he did,” said his proud cousin Chantel. “He’s a real trooper.”
Max has to keep fighting to stay strong, emotionally and physically as well. To keep his muscles strong, the family does exercises with him, which help him keep his head up.
Having a terminal illness like Menkes is very difficult, especially when you’re only three. However, Max has overcome each challenge that life has presented him with a smile on his face.
“He inspires us everyday because he is so strong. He goes through so many terrible things everyday and is still able to smile and giggle,” said Chantel. “Many horrible things can happen, but you can always find a reason to be happy.
“Max teaches you to be strong. He goes through so much, but fights through it every day.”
Chantel and her family want to use their experiences with Max to help raise awareness about Menkes disease.
One in every 100,000 babies has Menkes. Being such a rare disease, not many people know about it, but with more awareness and research being done, little boys like Max can continue living life to the fullest for as long as they can.
Kate Gibbs is a DTSS student writing a series of stories about local residents with diversabilities for The Valley Echo.