The Thomas Patrick Morrison Foundation, which was started by Guilderland residents Carmelina and Tim Morrison to honor their son, who died on Jan. 20, 2006, from a very rare genetic disorder, is holding its second annual golf classic on Wednesday, Sept. 19.
The event, to be held at the Orchard Creek Golf Course in Altamont, is an 18-hole scramble golf tournament with more than 100 golfers expected to participate. The family is hoping to raise $25,000 for the foundation to assist others who are suffering from rare genetic diseases and disorders.
The event will be hosted by News Channel 13 sports director Roger Wyland, and each golfer will get a complimentary fleece emblazoned with the foundation logo, as well as lunch, dinner and an opportunity to win individual and team tournament prizes.
A mysterious condition
Nearly two years ago, doctors had some serious news for the Morrisons.
Thomas Patrick, their second child, who was born Oct. 23, 2005, at St. Peter’s Hospital in Albany, had a low temperature and significantly low blood sugar levels, signs of a possible illness.
After several tests performed shortly after he was born, doctors began to suspect that Thomas had a mitochondrial disease.
When they told us that, we looked at them like, ‘I have no idea what you’re talking about,’ said Carmella Morrison.
The Morrisons, who also have a 4-year-old daughter, were sent to Albany Medical Center Hospital, where medical staff was able to test for mitochondrial and other genetic disorders.
Mitochondrial and metabolic medical conditions, which are collectively known as `mitochondrial cytopathies,` include more than 40 different identified diseases that have different genetic features. Often, with this type of disease, the mitochondria, which are like engines within the body’s cells, are unable to completely burn food and oxygen in order to generate energy.
Shortly after birth, Thomas had liver failure, so doctors began testing him for Tyrosinemia, a rare genetic disorder characterized by elevated blood levels of the amino acid tyrosine, a building block of most proteins. Symptoms of Tyrosinemia generally appear within the first few months after a child is born and include failure to gain weight, diarrhea, jaundice and an increased tendency to bleed.
Though Thomas displayed many of these symptoms, after several tests, doctors concluded that he did not have Tyrosinemia and sent him home.
Morrison said that for the most part, her son showed few signs of a serious illness in the weeks that he was home.
`We had a very happy baby. He smiled; he was responsive to us,` she said.
However, the Morrisons continued to make several trips to the doctor because Thomas failed to gain weight.
`We were constantly at the doctor’s office; constantly trying to figure out what it is,` she said.
A search for a diagnosis
After a trip to Boston Children’s Hospital, where doctors were unsuccessful in diagnosing the disease, the Morrisons were transferred to Rainbow Babies and Children’s Hospital in Cleveland, Ohio, to be treated by a doctor who specializes in mitochondrial disorders, Dr. Douglas Kerr.
Kerr said that, at the time Thomas came in for treatment, `his disorder was not known. He had severe liver failure, and it wasn’t clear that it was caused by a metabolic disease, and it didn’t seem to fit with anything we were considering.`
Meanwhile, the Morrisons were becoming frustrated, with few answers as to why their son was sick.
`There are so many different types of mitochondrial disorders, so if you can’t diagnose it, you can’t treat it,` Morrison said.
Despite doctors’ continuous efforts to come up with a diagnosis at Rainbow Children’s and Babies, Thomas died after undergoing surgery for a liver and a muscle biopsy.
Although the main cause of his death was infantile liver failure, it took doctors months to find out that the real culprit was a malfunctioning MPV 17 gene, an extremely rare condition that Thomas inherited recessively from both parents.
To date, there has been only limited research done on the MPV 17 gene, but the thinking now is that it may have been the cause of several cases of liver failure in children.
`Thomas’s unexplained, tragic death, in retrospect, has shed some important light on the relationship between basic genetic research diseases, and although there is no effective treatment for his condition, hopefully, it will be important to understanding diseases in the future,` said Kerr.
A way to move forward
In order to cope with their son’s death, the Morrisons started the Thomas Patrick Morrison Foundation. They started by asking for contributions in lieu of flowers in their son’s obituary. Eventually they were able to use their contacts to put together a committee of family members to help organize the golf tournament, which was first held last year.
Most of the proceeds from the tournament last year went toward grants for families with a child battling a rare health condition, as well as toward pre-paid meal cards to families with children hospitalized at Albany Medical Center.
`This gave us a purpose, and gave us a way to cope, and every time we do something, one more person knows about our son and mitochondrial disease,` Morrison said.
Melissa Hoopes, a friend and paralegal at Whiteman Osterman and Hanna LLP, one of the event’s sponsors, is a committee member.
She said the foundation aims to assist other families financially so they can spend time with their children and have a little help paying for meals and transportation.
`The Morrisons are very good people, and it’s a great organization and way to raise money, ` she said.
Hoopes played in the golf tournament last year.
`It’s a lot of fun, a nice tournament on a beautiful course, and the silent auction items are terrific,` she said.
To be a part of this year’s tournament, or for information about customized sponsorships, contact Carmelina S. Morrison at 281-0930, or at [email protected].“