Student helps boy suffering from Hunter’s Syndrome
his premature beginning, through three years of numerous surgeries and medical stays with forbearance, and even cheer.
At 22 months, Matthew was diagnosed with a rare disease called Hunter’s syndrome which affects only 2,000 people worldwide. Matthew is one of the approximately 500 cases in the United States.
Matthew’s father, Jeremy, said there are only two children in Utah who have Hunter’s Syndrome and they are both treated at Primary Children’s Hospital.
Hunter’s Syndrome is a genetic disease that is passed from mother to son causing the body to make a larger supply of certain enzymes than it can possibly use. The buildup then interferes with normal body processes.
Symptoms of Hunter’s manifest themselves by causing a hardened appearance of facial features, thickening of the heart valve, which makes its function more difficult, and loss of hearing, among other symptoms.
Matthew and his mother Billi are currently at the hospital because he just underwent a bone marrow transplant, which doctors hope will help his body to ebb the production of harmful buildup. This is just that last part of his difficult journey.
Since birth Matthew has been on a respirator and feeding tube, been diagnosed with chronic lung disease, had hypospadias repair, had tubes put in his ears, been treated for pneumonia, and received chemo-therapy.
Despite all the poking, prodding and pain, Matthew has an immense amount of patience and will even give smiles to those who come to see him.
“He likes to sit and watch Dora and Diego and plays video games,” said Jeremy. “He and his brothers play really well together.”
USU student Eden Tucker took Matthew’s story to heart when she found a letter selling candles to raise money for his family and his medical expenses.
Tucker said she remembers sitting in class and thinking about Matthew and about how it was just not fair that someone so young should have to go through something so terrible. She decided there was no reason she shouldn’t do something – anything she could to help.
Tucker sent copies of the letter to everyone she could think of and continues to help the Crockett family by raising funds and awareness.
On a more personal level, Tucker was able to go and visit Matthew while he was in the hospital.
“It was really hard to go to the hospital. It isn’t easy to see all those kids who are really sick,” said Tucker. “Before I opened Matthew’s door for the first time I had to stop and take a few breaths. It is one of those things that gets you right at your heart strings.”
Tucker told of how she walked in the door to find a tired little boy. He had just been through 10 days of chemotherapy, but was interacting with his parents and even managed to give her a smile.
Because of the rarity of Hunter’s Syndrome, there is no found cure; however doctors are working to prolong Matthew’s life.
Billi and Jeremy and their two older sons Mason and Braden have weathered tough trials throughout Matthew’s treatment.
Billi has been on medical leave from her job in Logan in order to stay in Salt Lake City to be with Matthew. Jeremy said there is a possibility she will be let go in January if she is unable to return to work at that time.
In addition to the strain placed on the family because of the distance and inherent stress of a medical situation, there is an immense financial burden.
Jeremy told of how they have to pay monthly rent for Billi to live in Salt Lake while the rest of the family is in Logan. Additionally, the Crockett’s insurance does not cover the medicine required to keep Matthew healthy.
His family is doing all they can to help Matthew survive.
“I just want to try and give hismas normal of a life and as long of a life as possible,” said Jeremy.
“Matthew is a really strong little boy,” said Jeremy. “He has a lot of fight in him.”
If anyone is interested in donating to help Matthew Crockett and his family, there is a pay pal account set up in his behalf. The account can be accessed by going to his website at www.mattheww.com.
-lyndim@cc.usu.edu