Kirby, who is 15 years old, was diagnosed with Sanfilippo disease at the age of 4. As Kirby worsens she needs more and more consistency in her life. At this juncture Kirby cannot talk and doesn’t understand her condition. Sue has managed to learn how best to give Kirby the care she needs and yet keep her family doing the normal things which families do such as take a vacation every year.

Not only is Sue dealing on a 24/7 basis with Kirby and her downward slide in her motor and speech skills, but she has recently admitted her mother to Assisted Living due to her advancing stages of Dementia/Alzheimer’s disease. Dementia and Sanfilippo disease are very similar in many ways regarding memory, motor and speech skills and the sporadic sleeping routines.

Sue’s mother was a full functioning woman and very active in Kirby’s care and support for the Wilsons but is now in need of her own increased level of care. Sue is experiencing a dramatic event in her life as she watches her previous and succeeding generation slide away from her at the same time.

Sanfilippo disease is a genetic disease, which is passed through the parents. Sue and Brad Wilson discovered they are both carriers of Sanfilippo. This disease did not occur in their older daughter who is19. It didn’t show up immediately upon Kirby’s birth so the Wilson’s didn’t realize what was ahead of them in the first few years of Kirby’s life.

Children with Sanfilippo are missing an essential enzyme that breaks down complex body sugar called heparan sulfate. This sugar slowly builds in the brain, stopping normal development and causing hyperactivity, sleep disorder, loss of speech, dementia and typically death before adulthood. The chances of Sanfilippo is 1 in 25,000 births. There is no cure yet!

When the Wilsons received the diagnosis it devastated Sue and literally "took her to her knees." Sue had over the past 8 years dealt with the death of her father in 1987 and her brother in 1989. Then in 1995 Kirby was diagnosed with the debilitating disease of Sanfilippo. Sue stated that as she reviewed her options she first gave thanks for the gift of time to possibly do something about it instead of just deal with it. At this point – on the ground – both physically and mentally she thought of her choices and did something positive.

She and her husband communicated with scientists and doctors found that money was the reason the research couldn’t be done. Shortly after this discovery they formed "The Children’s Medical Research Foundation." To date, the Foundation has funded seven of the many institutions working toward the cure. It is a model disease for other diseases such as Alzheimers, Parkinsons, strokes, and spinal cord injuries.

Today Kirby attends school and participates in a multi-needs program for profoundly mentally challenged children. There are about 17 districts involved in LADSE (LaGrange Area Department of Special Education) which includes the school district in which the Wilsons reside. Kirby has been in 3 different schools in the 3 years which is a negative factor when it comes to the consistency she requires in her daily life.

When Kirby was younger, and before the onset of Sanfilippo, she was coordinated and creative and participated in gym activities as well as music and art. She was in pre-school when the Wilsons learned of her condition but she was able to attend a regular kindergarten. Her motor skills were great at that point and she was only about 6 months behind in her speech level.

Today the Wilsons enjoy each moment, hour and day with Kirby as her degeneration is increasing rapidly. She can walk a short distance with assistance, her speech is deteriorating and her sleep patterns are very sporadic. The children afflicted typically succumb to the disease prior to adulthood.

I believe Sue Wilson is one of the strongest women I have had the opportunity to talk to. I admire her stamina and the love, care and patience she shares with both her daughter and her mother. I take my fairly normal daily life for granted and am blessed with two healthy adult children. I congratulate and applaud Sue and Brad Wilson and all the parents of children who are afflicted with Sanfilippo Syndrome.

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