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News
FHA’s Web Site Wins the National Hemophilia Foundation’s Award of Distinction in Communications
Mother’s Educational Focus Luncheon
By Joycy Ann LaCombe
Brunch downtown, what a warm introduction to the mothers, grandmothers, aunts and sisters of children with bleeding disorders here in South Florida. It was my pleasure to meet and mingle with a strong, vivacious group of women Sunday afternoon, for my first Mother’s Brunch at Perricone’s on Brickell Ave. The mood was right and the food was a delight as I was initiated into the group. It was enlightening to hear from mothers of newly diagnosed children to mothers and grandmothers of now young adults. These women came out to share their wisdom and show support to all who needed.
My son, Isaiah, has a mild form of Factor VII deficiency. After many occurrences of spontaneous nose bleeds during his first two years, we finally submitted Isaiah to the ER physicians at Joe DiMaggio. They performed a complete battery of tests relating to his symptoms and it was at that time that we learned of his condition. I really do not recall where we went from that point until the present, because my full grasp, which is still continually growing, did not occur until last summer when Isaiah was six. During the scheduling of a presumably outpatient procedure, I mentioned to the performing surgeon that Isaiah has a clotting disorder. The outpatient procedure quickly turned into a four day hospital stay as they planned to infuse prior to, during and after the surgery, monitoring the levels until discharge. With this knowledge in hand, I felt pretty confident about the procedure and just worked on mentally preparing my little boy for the stay. Little did I know the reality of his condition, it was upon discharge that I became hit with this information. Questions about which HTC center I regularly visited, arrangements for home health care, phone calls welcoming me to the Hemophilia Society…what? What was that last one? Is Isaiah a hemophiliac? Everyone seemed to be under the assumption that, as per his diagnosis, I was completely familiar with the standard procedures, the terminology and the precautions that were being taken. What a whirlwind! I distinctly recall receiving a phone call from a dear friend that afternoon and just breaking down. Taking breaths through tears, I mumbled about a huge box of supplies that had just been delivered, realizing that this was a chronic condition. I just felt completely overwhelmed.
Overwhelmed - I can now use that word in a positive light. From that moment forward, I have been overwhelmed with the outreach that I have received from this community. I remember speaking with Debbi, she was the first mother that I had the pleasure of sharing with, and share she did. I know I left that conversation with a page full of notes and a sense of direction on which steps to take next. As an educator and behavioral therapist, I am constantly searching for resources to give to my parents and families. That is not the case in this community. I have never seen an organization of people just so willing to pour out resources and information as I have experienced. It has truly been a blessing to find an organization like the Florida Hemophilia Association.
So again, I say it was with immense pleasure that I had the opportunity to finally meet and mingle with some of the strongest women, mothers, in South Florida. I look forward to many encounters in the future as we welcome newer mothers and bless them with the encouragement that you all have given me. Happy Mother’s Day Ladies!!
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Executively Speaking
It’s hard to believe that spring is here and summer is just around the corner. Before we know it, our kids will be finishing up the school year and going off to camp. Speaking of camp, if you haven’t already signed up for hemophilia camp at Boggy Creek, call your hemophilia treatment center for more information. Once again, we will be hosting the one day “Fonzie Dolphin Camp.” This year we will offer two dates: July 18 and August 1. If your child had the opportunity to attend last year, you know just how awesome it is. Please call us to reserve your spot today as space is limited.
Speaking of awesome, that brings me to the 25th Annual Family Education Symposium. This year’s meeting will be held later in the summer, August 8 - 10 at the newly renovated Embassy Suites Deerfield Beach Resort. We are now in the process of planning another great meeting. Many of you have asked about registration. Registration forms should be in the mail by the end of May. If you plan on attending, please be sure to fill them out in a timely manner as space is limited.
We’ve been extremely busy here at the Florida Hemophilia Association. Last month many of you received emails from me asking you to help by calling your legislators. Some of you are reluctant to get involved because you don’t fully understand the legislative process. Legislators want to hear from you to get your feedback. By becoming an advocate for hemophilia and bleeding disorders you will be helping by looking out for the interests of all people affected by hemophilia and bleeding disorders. We are in the early stages of planning a health fair day next year at our state Capitol. If you are interested in being part of the group, please let us know. Check out the “Washington Days” articles on Pages 6 - 7 to read about our adventures on the hill.
On another note, during March, Hemophilia Awareness month, we had an opportunity to help create awareness of hemophilia and bleeding disorders to people outside the community. On March 14 we hosted the 4th Annual Volley for a Cure Tennis Tournament at Coral Oaks Tennis Club. We raised $10,000 and in the process educated people about bleeding disorders. All of the ladies who attended had a great time and, of course, it was great for me because I had a chance to play tennis too! The Florida Christian School ran their Non-Uniform day again on March 28. It was a huge success. Find out more details about this great fund-raiser on page 4.
As usual, I am once again asking for your help to make your organization the best that it can be. Please help by volunteering. There are several ways to do this. If you have a particular interest or talent that you would like to share, please let us know. You have an opportunity to help with the annual “Swing for the Kids Golf Tournament” scheduled for October 23. If you have ever participated in a golf tournament or any fund-raiser, you know that there is a tremendous amount of planning that goes into it. Most of our funding for programs and services come from the proceeds of this tournament. Ways to help include getting raffle and auction items, soliciting sponsors, getting golfers, media exposure, etc.
Lastly, I wanted to mention a recent visitor to the Association. I had the great pleasure of meeting with Dr. N. Venkata Narayana from the Hemophilia Society, Hyderbad Chapter in India. Dr. Narayan was visiting a family in Miami and came by to learn more about our chapter. Like me, he became involved with his chapter because of a child affected with severe hemophilia. We talked about what it was like raising a child with a bleeding disorder. Unfortunately, our experiences with hemophilia were somewhat different.
My son Corey, now 14-years-old, has had an opportunity to live a typical life with complete access to healthcare and factor. He does everything any normal teenager does and more! I felt somewhat humbled as Dr. Narayana spoke about the struggles of his 22-year-old son with hemophilia. He explained “Since there isn’t a great supply of clotting factor they must always ration the doses by just giving small amounts.” His son will infuse only a small amount and then must be bed ridden for days so not to continue bleeding. Dr. Narayan showed me a photo of his son and other boys in his town and it just broke my heart. So many of them had deformities and were crippled because of not being able to infuse on a regular basis. He said “It is just too expensive to buy factor, even though I make a pretty decent living as a college professor.” “Even when we do get some it’s just a small amount.”
That evening I went home and told Corey about the meeting with Dr. Narayan. We talked about how lucky we are and how we sometimes take things for granted. Of course, I told him that the next time he whined about having to do factor he should remember the people less fortunate.
Sincerely,
Debbi Adamkin
FHA Executive Director
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