WELLAND — While 12-year-old Andrew Lanese hasn’t been well enough to attend St. Alexander Catholic School, his fellow students and staff still consider him to be a part of their team that went out on the soccer fields Tuesday.
The school hosted the first, of what is hoped to become annual, Andrew Lanese Invitational Junior Soccer Tournament on Tuesday and Monday.
At the age of 22 months, Andrew was diagnosed with Hunter syndrome, a rare genetic disorder that occurs when an enzyme the body needs is either missing or malfunctioning. Hunter syndrome eventually causes permanent, progressive damage affecting appearance, mental development, organ function and physical abilities, according to the Mayo Clinic website at www.mayoclinic.com.
For a few years now, the Lanese family has made requests to have the province cover enzyme replacement therapy, which costs just shy of $7,000 a week.
“They told us they will not fund it, so our hands are tied,” said Andrew’s mother, Sonia Lanese. “We have just enough funding for five more treatments.”
With the enzyme replacement treatment, which Andrew started in August of 2008, there have been positive changes to his condition, she said.
“There was an improvement with his quality of life. He didn’t huff and puff anymore … he was breathing better and able to walk further, with assistance. His liver and spleen came down in size. He’s able to hold a toy, which he couldn’t do anymore …”
Andrew has been a St. Alexander student for five years, although recently he hasn’t been well enough to attend classes on a regular basis. His mom said she was happy to learn the school decided to name the tournament in honour of Andrew and that it is continuing to keep his story alive.
“We still need help. We’re happy St. Alexander is keeping the spirit alive and we’re delighted they came up with a soccer tournament,” she said. “Andrew just loved sports as a child.”
At the age of four, Andrew played soccer. At age five he joined T-ball.
“He loved soccer for many years … he had a good time running around and playing with his friends,” said school principal Irene Ricci.
She said the school has hosted fundraisers for Andrew before and wanted to make sure they continue to show the family that they have not forgotten about him in his absence.
“His enzyme treatments cost money,” said Ricci. “This tournament probably won’t raise a lot of money, but we wanted (the Lanese family) to know we’re still thinking of them and support them through the challenges they have had funding (Andrew’s) enzyme treatments.”
The soccer tournament was designed as a fun day and way for schools to support another student. Schools were invited to participate. Holy Name, St. Mary, St. Kevin, St. Andrew, Alexander Kuska, St. Ann’s in Fenwick and, of course, St. Alexander all turned out for the event. A final total as to funds raised was not available Tuesday.
“(Andrew’s) brother Brad, who is in Grade 5, was there rooting on the teams and St. Alexander on behalf of his brother,” said Ricci.
Other fundraisers are in the works and details will be released when they become available.
For people who want to help the family continue Andrew’s treatments, a trust fund has been established. People can make donations at any Meridian Credit Union branch, using transit No. 62002 and account No 6-744411-49 in the name of Tony Bozza in Trust for Andrew Lanese.
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