Tuesday, September 23, 2008

The Icla da Silva Foundation – Helping Children with Leukemia

The Icla da Silva Foundation – Helping Children with Leukemia
by Lesley Hauge

She loved roller-blading and dancing and yearned for long, straight hair. Her hair never did grow back after the chemotherapy, and in 1992, 11-year-old Icla da Silva, three years after being diagnosed with a rare form of leukemia, died. In that three-year period between her diagnosis and her death, her family sold everything they had, moved from their comfortable life in Brazil to a cramped apartment on Roosevelt Island, endured near-bankruptcy and separation from each other when visas couldn’t be obtained, all in a desperate and ultimately futile bid to find treatment and a bone marrow donor that exactly matched Icla’s genetic profile.

Icla da Silva.
But, even through the grief, and in honor of Icla’s wishes, the da Silva family went on to found The Icla da Silva Foundation. Today it is the largest recruitment organization for bone marrow donors in the country.

As Airam da Silva, Icla’s brother and Executive Vice President of the foundation admits, it is not an easy task. ‘Chilled to the bone’ ... ‘thrilled to the marrow’ – the very words reach to the core of our being, the place that is as far within us as we can go, and, ironically, it is this word-association that plays on our consciousness when we hear the words ‘bone marrow’ conveying, as it does, a painful donation procedure.

In fact, registering to be a donor involves nothing more than filling in a form followed by a self-administered painless cheek cell swab using four Q-tips, which is then packed up and sent through the mail to be processed and eventually stored in the National Marrow Donor Program Registry.

The chances of being a perfect DNA match for someone suffering from leukemia are small. Over the 80,000 people who registered in the last three years, only 78 have donated bone marrow cells (there are over seven million registered donors in the registry as a whole) and that procedure is also relatively simple.

Just to brush up on the biology, our blood is created in our bones and bone marrow cells are the ‘mother’ cells of our other blood cells. A bone marrow donation is, 90 percent of the time, essentially a blood donation.
A note from Icla de Silva and a drawing by Alci da Silva done while sitting next to Icla's hospital bed after her chemotherapy.
The process of finding a match is fascinating and rare. It is more likely that a match will be found within the patient’s own ethnic group but surprises occur, such as a dark-haired Colombian woman with brown eyes matching a blonde, blue-eyed 16-year old from Ohio. Donors who match patients have, in some senses, found their genetic twin.

Once they agree to the donation, a drug, (Filgrastim) is administered to help increase the bone marrow cell count over a five-day period. The side effects can make the donor feel as though they have a heavy cold, but after the blood donation (a couple of hours), donors generally feel well again.
A class assignment entitled "My Life," by Icla da Silva. Jan, 8, 1991.
In only ten to 15 percent of cases is it necessary to administer a general anaesthetic and remove cells from the pelvic bone, which results in few days of soreness – alleviated, say the donors, by the knowledge that they have saved someone’s life.

As Airam da Silva says ‘There are people who are alive because of the work we do. If you’re doing good work, and you are saving lives, there is going to be a time when something good will come back.’

You can reach the National Marrow Donor Program at www.marrow.org or 1 (800) MARROW-2 and the Icla da Silva Foundation at: The Icla da Silva Foundation, www.icla.org.

A benefit for the Icla da Silva Foundation will be held this Wednesday, September 24th at the Tavern on the Green.