Brandon Twp.- At first glance, it wouldn’t appear Robbie Williams is anything but a normal 7-year-old.
The brown-haired, brown-eyed boy wears a t-shirt and jeans and appears tan. He sits on the floor in the living room of his home playing with a Thomas the Tank Engine train set. When he smiles, he reveals a missing front tooth.
But when a visitor asks if he is Robbie, he responds, ‘Yep, I’m the one with all the Band-Aids.?
A yellow bandage covers the area on his arm where he recently had blood drawn. Robbie doesn’t like having his blood drawn, but he doesn’t complain about what has become a common occurrence, for although nothing initially appears to be wrong, he is ill.
Robbie has Fanconi Anemia, a rare, inherited blood disease that leads to aplastic anemia– severe bone marrow failure.
Robbie has had low iron since he was born and bruised badly from about the age of 2, but his parents, Brenda Carpenter and Kevin Williams, were told by his pediatrician that low iron is common in children. He took iron drops and vitamins, but his bruising was getting worse and he wasn’t gaining weight. In August 2004, blood tests revealed a low platelet count and a diagnosis of Fanconi Anemia was made last December. Robbie also has one thumb that is smaller than the other, a heart murmur and short stature, all symptoms of the disease he was born with and which only 1,000 people share nationwide. Robbie’s parents each had the recessive gene for Fanconi Anemia, giving him a one-in-four chance of having the disease he was born with.
At the same time Robbie was diagnosed with Fanconi Anemia, he was told he also had the bone marrow failure– aplastic anemia– that results from it. The only cure for aplastic anemia is a bone marrow transplant. An almost perfect donor match has been found and Robbie needs the transplant soon, because he has also developed Monosomy 7, pre-cancerous cells that can lead to leukemia.
Robbie is currently scheduled to be admitted to Cincinnati Children’s Hospital Medical Center on Nov. 29, with Dec. 6 as the tentative transplant date. The hospital is one of only three in the nation that have a comprehensive care center for Fanconi Anemia patients (the others are the University of Minnesota and Memorial Sloan Kettering in New York).
Robbie’s transplant will be more complicated because of his illness. He will be hospitalized for a month and will need to see doctors from the Children’s Hospital three to four days a week after leaving the hospital until eventually needing to see them once a week. The whole process could take 4-6 months and presents a financial hardship for the family.
Because of the financial strain it will cause for Robbie’s parents to stay with him in Ohio, family friend Lindsey Metzoian has organized a bowling fundraiser from 2-9 p.m., Nov. 13 at Collier Lanes Bowling Alley, 879 S. Lapeer Road, Oxford.
‘He needs the transplant now and the finances just aren’t there,? said Robbie’s mom, Brenda Carpenter. ‘Things happened faster than we anticipated.?
A silent auction will also take place from 3-5 p.m. at the bowling alley that day and there will be a 50/50 raffle. Carpenter notes that many local businesses in Oxford and in Brandon Township have been supportive, donating gift baskets and gift certificates for restaurants, manicures, wireless toys, car washes, tanning services and more.
Robbie’s parents are grateful.
‘There hasn’t been too many rays of light in this situation, but every bit of help makes a difference,? said Kevin Williams, Robbie’s father.
Robbie can’t play sports and has to be very careful to not get any cuts or hit his head because he will hemmorhage. He has to wear a mask when going out in public and if he shows any signs of nausea, vomiting, nosebleeds, headaches, or high fever, must be taken to the hospital. He must also get to the hospital within 72 hours if he is exposed to someone with chicken pox or measles. Last year, his mother says, he was out of school more than he was in. Robbie has been homebound this school year and will probably remain that way. A teacher from Harvey Swanson Elementary comes to his home twice a week.
But through all his trials the past year, Carpenter says her son has been ‘a champ.? She notes they recently spent three days in Ohio and Robbie was in testing from 8 a.m.- 5 p.m. the first day and then went in the next day at 6 a.m. and didn’t get out of the hospital until the following day until 2 p.m., but yet, he had no complaints.
‘He’s a trooper,? she says. ‘We’ve been through the why us, why him. It’s not been easy, it’s hard. You never dream it’ll happen to you, but then you wake up and it has… I’ve had my ups and downs. I’m scared to death about the transplant. In trying to get a good outcome there’s a lot of complications that can happen. No parent wants to be faced with a bad outcome… It’s a roller coaster ride.?
A bowling fundraiser for Robbie Williams will be 2-9 p.m., Nov. 13, at Collier Lanes Bowling Alley, 879 S. Lapeer Road, Oxford. Cost is $20 per adult, $10 age 15 and under. A silent auction will be 3-5 p.m. and there will be a 50/50 raffle. For details, call Lindsey at (248) 842-3418.
A bake sale fundraiser will be 10 a.m.- 6 p.m., Nov. 10 and Nov. 17 at Kroger, 460 N. Lapeer Road, Orion Twp.