Programs
Eshton Hewitt Quality Of Life Project
The Dr. Willian N. Drohan Scholarship
Please send donations to:
The William N. Drohan
Scholarship Fund
The Coalition for Hemophilia B
825 Third Avenue, Suite 226
New York, NY 10022
Eshton Hewitt Quality Of Life Project
Eshton Hewitt has severe hemophilia B with inhibitors and anaphylaxis (a severe, sometimes fatal allergy) to factor IX. He also has a connective tissue (ligaments, tendons, skin) disorder that causes dislocations. There is no family history of the hemophilia so he was not diagnosed until he was six months old. Joyce and Jay Hewitt also learned of the Connective TissueDisorder known as Ehlers-Danlos Syndrome (EDS) three and a half years ago when both the boys (Eshton.s twin brother Tekoa) and their mother, Joyce were diagnosed with EDS. The combination of disorders has wreaked havoc on Eshton.s body causing severe joint damage and making it difficult at best to control the bleeding episodes that inevitably follow a subluxation, or dislocation.
After a great deal of research and struggle to find adequate long-term care for Eshton, his parents decided that his best opportunity to slow the progression of disease in his joints was to strengthen the muscles supporting them throughexercise. Eshton has four target joints and has already undergone a radionucletide Synovectomy which was considered a failure after he hemorrhaged six months post procedure.
The problem with using exercise to strengthen is the inability of his joints to handle the pressure of even the lowest impact exercise or therapy. Therefore aquatic exercise, which has basically no impact on the joints, is the best option. Eshton is not able to swim in a public swimming pool due to the combination of his fragile skin and having a port (which makes him susceptible to infection). There is no way to regularly test a public pool for bacteria and the Health Department does not require that logs be kept showing their testing. This puts him at a very high risk.
The Hewitts started out with an outdoor above-ground pool. When Eshton was swimming his bleeding episodes decreased and they had to infuse him less. (When Eshton has a bleed he has to be infused every 3-6 hours (depending on the dosage) for 1-4 days until he has full range of motion due to the EDS).
As published in the Michigan Flint Journal (Title: Pool to Help Boy Be Like Any Other Kid; Businesses come through for mom; July 26, 2003) .When Eshton is in water, everything is normal for him.. Joyce Hewitt explained. .One time he was swimming and said he was so happy we had the pool and that when I.m in here, it.s like I.m like any other kid!. The difference was enough that Joyce and Jay wanted to give him a better quality of life year-round and that meant building an in-door swimming pool.
To date the exterior shell is complete, the pool is now enclosed and the room is heated. However, additional funding is needed to bring the project to completion:
- Tongue and groove cedar board for poolroom ceiling: $2,000
- Labor for Installation of cedar board (we don’t have the equipment to install): $2,400
- Dehumidifying System (will also provide for temperature control during summer and will need to be installed) $10,000
- Concrete sealer and waterproof for poolroom floor: $100.00
- Insulation for poolroom roof and partial re-shingling (the rest was re-roofed during the tie-in of the new structure): $2,500.00
- Plumbing needs to be re-run to accommodate handicap bathroom $2,000
- Wood for overhang and wood for over handicapped ramp (to eliminate ice dams): $1,800.00
- Monthly power bill: $379.00
If you can help, please contact Kim Phelan at (212) 554-6898. Thank you!
The Coalition for Hemophilia B formed an umbrella project called .The Eshton Hewitt Quality of Life Project.. Joyce and Jay Hewitt mailed out many letters and made numerous phone calls to prospective donors for this project. Soon after, donations for building supplies, pools, roofing material, windows and doors, a boiler and plumbing supplies came in. Individuals, companies and The Coalition for Hemophilia B donated monetarily as well. The Hewitts were completely overwhelmed and never expected an out-pouring of such magnitude. Joyce Hewitt said “without the support we would never have been able to make this dream a reality for our son.”
The good news of all this is that Eshton has been able to be more active than ever before. He is actually able to play outside with friends and the range of motion in his ankles (two of his target joints) has begun to increase. The fact that he has any range of motion is an improvement and only the beginning of what aquatic therapy can and will do for him.
As the Eshton family is still knee deep in construction, they said if they had to do it all again they would. Joyce Hewitt stated “when NovoSeven was licensed it was a blessing and a life-altering occasion (Eshton was four then) but to not bleed even half as much as he has is a big, if not bigger, moment for us. We are talking about the difference between trying to stop the damage that occurs every time he bleeds into his joints versus a dramatic decrease in bleeding which slows down the progression of joint disease and gives him a more normal life. We contribute this change directly to his ability to strengthen his muscles while in the pool without causing joint damage.”
“It is very difficult for me to put into words what it has meant for Eshton to be able to go outside and play. As a mother it is almost impossible to measure what that means to my heart. As he has found some freedom and hope, my heart has as well. I can see a much different future for my little boy than I have been able to in many years and all I can say is thank you. Thank you to all who gave and to all who have supported us with their help and donations. We are richly blessed!” - Joyce Hewitt
Dr. William N. Drohan
Bill and youngest daughter, Laura at Redskins Game
I am sure many of you in the hemophilia community have had the pleasure of meeting Bill Drohan over the years. If you did, you would not forget him, he was one of the nicest people I have ever known. On March 25th, Bill lost his battle with metastic lung cancer. He was 60 years old.
Bill was a well-known microbiologist and educator who will be remembered for his many contributions to science. He was a pioneer in using molecular biology to produce recombinant proteins and a visionary scientist who dedicated his life to improving the safety of blood and blood products. Other important contributions include investigating mad cow disease in the blood supply, and his development of novel ways to treat traumatic injuries including bandages to stem hemorrhage. Bill had a great sense of humor and carried that into his work. I remember seeing a scientific slide show presentation on transgenic proteins and Bill was in the slideshow dressed in a pig costume!
Bill was equally dedicated to scientific research and to mentoring students and young scientists.
His career included important positions with the National Cancer Institute, The American Red Cross, and private companies dedicated to treating bloodborne disorders, most recently as Chief Scientific Officer of STB, Ltd., as well as Chief Scientific Officer at Inspiration Biopharmaceuticals, Inc. and previously Chief Scientific Officer of Clearant Inc. He was also a very involved Board Member of The Coalition for Hemophilia B, his passion; drive and vision were instrumental in the formation of the Coalition when it first began in the early 1990’s. Bill served as Professor in the Graduate Program of the Department of Genetics of George Washington University and formerly as Adjunct Professor in the Department of Chemical and Biochemical Engineering of the University of Maryland. Dr. Drohan published more than 145 scientific papers and holds 30 U.S. patents. He served on the editorial boards of several scientific journals, and was a member of the Scientific Steering Committee for Blood Products at the Walter Reed Army Institute of Research and the Chairman for the Panel on Biotechnology of the National Research Council.
Bill’s professional and personal enthusiasm was always a great motivation for many fortunate to have worked with him. He will be remembered by many younger scientists for his generous mentoring role. In addition to his passion for science and business, Bill was an avid sports fan whose next-day summaries of the Virginia Tech Hokies’ games or Washington Redskins football games were eagerly anticipated by all. Bill asked that his friends, family and professional colleagues celebrate the life that was whenever they think of his passing, rather than grieve his loss. He leaves to all of us a legacy of scientific achievement and inspirational leadership that was accompanied by
an extraordinary level of kindness and generosity.
John Taylor, Kim Phelan and Bill Drohan, exhibiting at annual NHF Conference in 1996
On March 31st, Bill’s wife Marian, and their 5 children, Colleen, Maureen, Kathleen, Laura and Craig attended the Coalition for Hemophilia B Symposium in New York where we presented the family with a plaque that establishes a scholarship fund in Bill’s name. The scholarship fund is for children of scientists, working in the hemophilia area, who have a need for funds, especially those who have lost their father or mother. Anyone who wishes to make a contribution can send a check payable to: The Dr. William N. Drohan Scholarship Fund and mail to: The Coalition for Hemophilia B, 825 Third Avenue, Suite 226, New York, NY 10022, Attn: Kim Phelan
When somebody dies, a cloud turns into an angel
and flies up to tell God to put another flower
on a pillow. A bird givse the message back to
the world and sings a silent prayer that makes
the rain cry…
People disappear, but they never really go away.
The spirits up there put the sun to bed, wake up
the grass, and spin the earth in dizzy circles.
Sometimes you can see them dancing in a cloud
during the daytime when they’re supposed to be
sleeping.
They paint the rainbows and also the sunsets
and make waves splash and tug at the tide.
They toss shooting stars and listen to wishes.
And when they sing windsongs, they whisper to
us, “Don’t miss me too much. The view is nice,
and I’m doing just fine.”