Looking Back…Moving Forward: A Journey of Support

As we continue our interview series commemorating our 30th anniversary, this week we sit down with one of the longest-standing members of our association and a member of our Board of Directors, Debby Buffa. Debby has three adult children. Her two oldest daughters, Sarah and Stephanie, both have hydrocephalus. Debby has worked with hydrocephalus families since 1987 when she began a support group in St. Louis. She spent the majority of her professional career as a manager of a neurosurgery practice in St. Louis. After the birth of her granddaughter, she recently returned to work in real estate. Debby sits down with Amanda Garzon, our Communications and Marketing Manager, and shares her journey with her two daughters, her view on the evolution of HA, and her message to parents and individuals whose lives are touched by hydrocephalus.

HA: How did you find HA?

DEBBY: My husband and I have three children. Our two daughters both have hydrocephalus. The girls are 13 months apart. Our younger daughter was diagnosed in 1981 when she was six weeks old. My older daughter was diagnosed in 1984 at age 4. At that time, I called the 800 number on the back of the patient care booklet for Cordis Hakim shunts that was given to us in the hospital. Dr. Marvin Sussman, the director of the neuroscience division for the Cordis Corporation, called me back. I told him of my struggle to find appropriate information regarding hydrocephalus and that I wanted to begin a support group in the St. Louis area. He put me in touch with Emily Fudge and Cynthia Solomon in San Francisco, who were just beginning a support group in their area (The Hydrocephalus Foundation of Northern California).

At that time, there was no internet or easy access to information. Emily and Cynthia were my lifelines, particularly when my older daughter had continued revisions on her shunt. When I began my support group in St. Louis, I was always calling them to get their input and suggestions on what to do at meetings and we would compare notes. It was so wonderful to talk to other mothers of kids with hydrocephalus that was also providing support to parents.

In 1987, I attended the first conference and finally met them both for the first time. It was also a thrill to meet Dr. Salomon Hakim and his son, who were in attendance. I also had the pleasure of personally meeting Dr. Marvin Sussman when he was in St. Louis for business. Dr. Sussman provided many helpful educational items for our St. Louis support group and has continued to remain a great friend of our entire family.

HA: In what capacity did you first get involved?

DEBBY: Emily, Cynthia, and I had similar goals for supporting parents so it was a normal progression for me to become involved with HA as they grew. I have attended every conference with the exception of one (when my oldest was having many revisions) and assisted at each in whatever way I was needed. In the beginning, I was asked to do sessions with other moms. As the years went on, I have had the honor of being asked to be a speaker on various subjects. Now my daughters are 32 and 33 and are continuing the tradition of support by being involved in HA conferences and our St. Louis HA walk.

I was elected to the board of directors in 2005, and I have held the position of Secretary on the Executive Committee for a term. I am proud to represent parents and local support partners as their voice on the board.

HA: You have been with HA since the earliest days. How have you seen HA change over the years?

DEBBY: HA has evolved from a small family and friends group to a large, professionally-run organization serving a diverse hydrocephalus community. HA has an excellent reputation with the medical community, most notably the AANS, CNS, and AANN, and has become the “place to go to” for information, support, and research for those with hydrocephalus. HA has gone through struggles, peaks, and valleys, but throughout the years has remained steadfast in the mission to help support and educate individuals dealing with hydrocephalus while enhancing the mission to include research, thereby giving families hope for the future. With our move to the Washington, D.C. area, I feel we are on the road to becoming a “force to be reckoned with.”

HA: What else would you like to see HA do?

DEBBY: I would like to see HA offer mini-conferences around the country. There are many families that cannot attend the biennial conferences and this would give them the chance to come together to support each other, learn new information, and have fun!

HA: Where would you like to see HA in 5 years?

DEBBY: It would be wonderful if EVERY PERSON diagnosed with hydrocephalus was given information about HA at the time of their diagnosis and at the time of any revisions. Too many people still don’t know about the Hydrocephalus Association and feel they are the only ones out there with this condition. I would also like to HA be a big player in national healthcare issues.

HA: What is your favorite HA memory?

DEBBY: The dinner dances. It always brings tears to my eyes. Where else can you see everyone dancing with pure joy? No one cares about shaved heads, scars, wheelchairs, walkers, age, looks, color – we are one community, accepting each other as we are and loving being together!

HA: What message do you have for other parents?

DEBBY: Never let hydrocephalus define your child!

HA: What message do you have for the staff of HA?

DEBBY: Remember, this may be your job but to those with hydrocephalus, it is their life! Be kind, be compassionate and listen. One person never represents HA. We are all working together to make life better for those with hydrocephalus. WE ARE ALL THE FACE OF HA!

HA: What message do you have for individuals living with hydrocephalus?

DEBBY: Take the word CAN’T out of your vocabulary. YOU are loved! YOU are the future! Dream big and make it happen!