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Hemangioma Hope

Cindy Dougan 8400 Rohl RD, North East, PA 16428 E-mail: CDouganHH@AOL.COM

Dear Friends:
Can you believe we were ten years old in February? I can't! The time seems to have gone by in a blink of an eye. I am so very thankful to the Lord for allowing Hemangioma Hope to be born those many years ago in February. God is good! As I sit here at my dining room table reflecting over these past 10 years, I think back to that day about 12 years ago when I had a call from Dr. Joseph McCarthy (our daughter, Jennifer's physician) asking us if we would be willing to speak with Joan Goulianos, a writer, who wanted to do an article about Jennifer and ourt struggle with finding a doctor who could treat her for the hemangiomas that had taken over her nose.
My husband, Roger, and I agreed to speak with her believing that if we could help one other family not feel ALONE in this-- that it would all be worth it.
Well we met Joan and she stayed in our home with us for the weekend and interviewed us. She wrote her article and the magazine said that they didn't like it and wanted to change some things before it went to print. We could not change it. It was the truth. It was our story; and it was our life. Joan felt that we would be disappointed if it wasn't published and I said, Oh no, not at all, if God wants it published, it will be in His time.
The article was published by Redbook magazine (no changes to the article) in February, 1987. It was then that I was flooded with calls and letters from so many other families. For the next two years, I personally wrote back to each family or individual and returned all phone calls listening to each family's story. Hemangioma Hope had been born! I felt this was my ministry. But I must admit, I became overwhelmed by all the people who needed help. I talked to my pastor, who encouraged me to stay with it and start a support group for families and a prayer ministry for children. So I continued my efforts with help from my church. Our church secretary helped me get the Hemangioma Hope newsletter started (even though I still continue to write personally to families and I take all phone calls) and we continued on from there adding the prayer list, doctor list, and directory. Let me repeat, God is good!
Our first Prayer List was only one sheet of paper folded in half ( just like our present one); but we had enough room on the page to put each child's name, age, city and state, where the hemangioma was located, if surgery was performed, etc. We are not able to do this any longer.
Our Mailing List started off with about 75 people, but we needed 200 to mail bulk. So we added relatives of Hemangioma Hope families, our church congregation, and some of my relatives to make up the difference. Today, we do not need to make up that difference as we mail to over 600 families across the US, Canada, and Puerto Rico. It had only taken two of us to fold and send out the newsletter. Now volunteers from the church come in and help.
We did not start off with a List of Doctors, but added it as people started asking me if I knew who would be the closest doctor to them that specialized in vascular birthmarks. And, of course they wanted to know who else had been to see that doctor - so that they could talk to them about the surgery, procedures, advice, etc. Our first Doctor List had about five doctors on it, but grew when more people wanted others to know about the doctor they went to and of course they became our contact person for him. Some doctors have even called after finding out about us and asked to be placed on the list.
We, also, had a Contact List. It consisted of people who were willing to have anyone call or write them; but we have grown so much that we abandoned it and came up with the idea of a directory of Hemangioma Hope families. That way you could find someone in your state and maybe a nearby city that you could correspond with.
Believe it or not up until 2 years ago, all the work was done by a simple, electric typewriter. Can you imagine updating the prayer list, doctor list and especially the directory - What a Chore- it took weeks to do. The new computer our church purchased has helped us out tremendously. We now have added a modem to the computer so that we can receive faxes and E-mail.
Lastly, we decided that some of you would like to meet face to face - so what better way than a Family Reunion! We wanted it to be fun for the kids, to show them that there are other kids just like them, and also give the parents a chance to hear all the triumphs, see the results of different treatments, and just to be in fellowship. After the first reunion, we thought it would be helpful if we had a specialist come and talk to the parents. This was added to our program with Dr. Joseph McCarthy being our very first speaker, followed by Dr. Milton Waner, and Dr. Michael Denk who were all here to speak to the families, give a free medical examination of each child and also schedule surgeries. Linda Shannon, a vascular birthmark researcher, was also here to speak about her own daughter, Christine, who had a hemangioma on her bottom lip until it was surgically removed, and also to give us some insight on the research she was doing and how it was going to help all of us. There was never any cost to a family except for thier motel rooms ( if they did not wish to stay with a host family from our congregation). We hope to some day help with the travel costs and motel stay so that more people can come. Our business community has been a great help in donating food and crafts for the families. And, I will never forget how generous my church family is. They helped with food donations; prepared food for lunches, picnics and dinners; set up tables and tents; supervising and entertaining the kids with crafts and games, help with the balloon launch; hosting Hemangioma Hope families; and most of all they gave a lot of their time. Everyone has been wonderful to us and I can't thank them enough!
There is much more awareness of wascular birthmarks now than when I first went looking for help for Jennifer. We took her to every doctor imaginable and no one knew what was wrong with her and when I finally found a doctor who did, he was afraid to operate - as she might bleed to death. Even after I started Hemangioma Hope, several years later, there was still not that much knowledge and very few doctors who specialized in this field. But I have seen so much change over the past 3-4 years. We have so many more specialists in this field; there are newer ways of treating these birthmarks (drugs); and the equipment that has been developed ( pulsed dye lasers and copper vapor lasers) is outstanding and there is so much more research being done. Thanks to Dr. Milton Waner and Linda Shannon, and of course, with the help of all of you who were interviewed and or examined by them and filled out one of Linda's survey forms, we now have a new text book for our physicians to refer to. If you haven't filled out one of Linda's survey forms- Please do and return it to Linda - you may not realize how important this is to her research and you, this research is helping so many Hemangioma Hope families.
Did I ever dream that God would use me in this way? No.never. I was and am just a parent, like you, who loves her child and would do Anything to help her get better. You see, God really does have a plan for our lives. He has us here on this earth at this time for a reason. The greatest love that we can ever receive is from God. The greatest gift that we can give to Him is to share that love with others.
I am very privileged to be able to be used by God in this way; and it's only a small way. He gets the glory for all that is done! He uses us and has given All of US gifts. Look at the way he has gifted our doctor's hands, our researcher (Linda Shannon), our other support groups and organizations such as:
  • Hemangioma Newsline - Karla Hall
  • Hemangioma Research and Education- Pam and Carrie Wicker
  • Let's Face It- Betsy Wilson
  • National Vascular Malformation Foundation- Mary Burris
  • Sturge-Weber Foundation- Karen Ball
There are so many others. Do we get tired, frustrated, and stressed? You bet! But then God sends a letter or a phone call from one of you to encourage us and tell us how much HOPE that they now have because they know that there is expert medical help available along with support for the family and most importantly prayer support for everyone involved, from the child who is the patient to the doctor who is performing the surgery. Oh how God is good!

New Clinic- OPEN

We have some exciting news about the new Hemangioma and Vascular Malformation Birthmark Center at the Buffalo Children's Hospital. On January 3, 1997, they officially opened. Dr. Linda Brodsky, professor of pediatric otolaryngology is the medical director. The center provides a specialty team of professionals experienced in the diagnosis and treatment of hemangiomas and vascular malformations. The center has access to the latest drug, surgical, and laser treatments. While the center has a special focus on children, it welcomes patients of any age. On the first day they opened, the clinic saw 12 children and did 4 surgeries. They have 6 children and 3 laser surgeries set up for their next clinic. We would truly like to thank Dr. Brodsky, Dr. Milton Waner, Dr. Michael Denk, Linda Shannon, and Pat and Sandy Collins for their hard work in getting this clinic off the ground. Sandy Collins is the nurse coordinator and would be happy to answer any questions regarding the center. E-mail her at collins6@vivanet.com.

VOLUNTEER PILOTS ASSOC.

The VPA (Volunteer Pilots Association) is a charitable association of volunteer pilots and non-pilots dedicated to serving the community. VPA pilots will provide FREE air transportation on private aircrafts to needy people who must travel for medical treatment. Their address is:
PO BOX 95
Hickory, PA 15340
How thankful we are to these wonderful pilots and non-pilots who are so willing to give to others. Please contact them if you want more information.

Hemangioma Hope's goal is and will always be to:

  • Reach out to others in need
  • Bring Hope where there seems none
  • Comfort, listen, and encourage
  • Put you in contact with the right person or doctor
  • Pass on valuable information
  • Let you know how other Hemangioma Hope families are coping

It has been very exciting for me to work with so many of you. May our focus stay on helping these dear litle ones and their families. It has been a wonderful ten years and may the dear Lord bless us with many more
In God's Love,
Cindy Dougan

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