FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

FUNDRAISINGHonoring the Beloved Memoryof Our Fallen Diamondby Derek PerssonWe knew early on that there weregoing to be some complications withDiamond Ashley’s birth. However,we could never imagine the fears andhorrors that we would have to livethrough in her short life. Shortlyafter Diamond was born on October16, 2001, the doctors told us thatDiamond had a disease called Fanconianemia. They explained to usthat FA is a very rare genetic disorderand that Diamond would ultimatelyhave bone marrow failure and diebefore she reached adulthood. Thisnews about my first and only childwas devastating. While we sat thereand watched her those first 30 daysin the NICU, we thought that wewould never be able to bring herFundraising Assistancehome. We were very lucky tohave a great medical supportstaff at the hospital. Theyhelped prepare us to bringDiamond home 30 days afterher birth, still weighing onlyapproximately 5 lbs.The geneticist at the hospitalreferred us to the websitefor the Fanconi AnemiaResearch Fund. Our hopes forthe future started to change.We realized that we were notthe only family out there facingthis horrible fight. We went toregional meetings and joined thee-mail group. Words cannot expressthe support and love that we receivedfrom the other families dealing withAlmost all of the donations (85%) to the FA Research Fund areraised by FA families. If you are not now involved in raising funds for FAresearch, we very much need your help. The staff of the Fund will behappy to assist you. We’ll help you write or edit your fundraising letter;photocopy it; provide the postage; and mail it from our office, usingyour mailing list. If you’re going to hold a fundraising event, we’ll providesimilar help.The FA Research Fund asks FA parents to make certain that anyevent they hold is covered by liability insurance. This insurance for aone-time event is often available through a family’s homeowners insuranceas a relatively inexpensive insurance rider. Please contact the Fundif you need assistance obtaining or paying for this required insurance.When a donation is received, we’ll send a letter of thanks from theFund with a tax receipt, and we’ll notify you that a donation has beenmade in your name. One request: Please ask your donors to write theirdonation check to the “Fanconi Anemia Research Fund.”Our sincere thanks go to all of you for your efforts to raise funds tocombat this devastating disease.Derek and Diamond Ashley Perssonour same problems and concerns.We planned a dinner/dance benefitin Diamond’s honor in the summerof 2002. This was Diamond’s“coming out” party. We had kept hersecluded from the outside worldbefore this, because of so manyunknown fears. This was the firstchance for a lot of family and friendsto meet her. Looking back, it was oneof our best events. We had a DJ playsome music and speakers talk aboutthe need for bone marrow donors.We also had a raffle and silent auction.We raised over $7,000 thatnight.Those funds paid medical billsand helped pay for trips to Cincinnatito see Dr. Harris, to Minnesotato see Dr. Wagner, to New York tosee Dr. Auerbach, and then to the FAFamily meeting in Maine. Theknowledge and friendships that wegained through these trips were justamazing. We finally thought that wewere on top of the disease and had agood plan for the future.continued on page 1914 FA Family Newsletter