There are so many things that caught me by surprise when I became a mother. I always knew I wanted to have children, but I was never really in touch with my expectations beyond that. I certainly never anticipated that I would become the mother of children with special needs.
When our son burst joyfully into the world over 13 years ago, he instantly placed us in that role with the mere testing of umbilical cord blood. We knew hemophilia, a genetic bleeding disorder, might be a possibility because of my sister’s sons, but we clung to the delusion of, “Surely it can’t happen to US.” It did happen to us, and life has never been the same since.
One of the scariest parts of raising a child with hemophilia is that it is a rare disorder. Only an estimated 17,000 people in the United States have classic hemophilia. What this means to our son, to our family, is that most medical professionals have nothing beyond a cursory, classroom knowledge of the disorder or how to treat it. In fact, when our child was first diagnosed, our hemophilia treatment center taught us that parents have a more in-depth knowledge of this diagnosis than your average emergency room staff.
In addition, this means that treatment is insanely expensive. Currently, our son’s clotting factor alone runs anywhere from $200,000 – $260,000 per year. If you add to that the costs of hospitalizations (at least one seems to come every year), the extra therapies because of complications caused by the disorder, additional medications, the continual driving to doctors, hospitals and therapists, treatment expenses are prohibitive.
There are so many other concerns as well. When our son was born, there was actually a shortage of clotting factor in the country. This was tremendously frightening to the bleeding disorders community. The amount of missed school that a family can face when a child has a rare disorder can also be staggering. And a cure for the disorder? The last time that seemed to be within sight, a patient died during the clinical trials.
All of this can make a parent feel so very alone. But you may be quite surprised to learn what I discovered in leading a ministry for parents raising children with special needs. I am nowhere near alone!
If you were to look at the cross-section of parents served by our ministry, those parents would likely fall into one of two categories – parents raising kids on the Autism Spectrum, or parents raising a child with a rare disorder. I was, frankly, surprised to learn this over the years.
The statistics on “rare” disease
- In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group.
- There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
- 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.
Many people would be shocked to learn that diagnoses they have heard of before, such as Angelman Syndrome, Celiac Disease, Cerebral Palsy, Crohn’s Disease, Cystic Fibrosis, Duchenne Muscular Dystrophy, Hydrocephalus, Juvenile Rheumatoid Arthritis, Multiple Sclerosis, Spina Bifida, and multiple chromosomal disorders all fall under the “rare disease” umbrella.
For this reason, I could not help but personally get behind the observance of World Rare Disease Day when I first learned of it a number of years ago. Ironically, I discovered after enrolling as a Rare Disease Day Ambassador that at least one of our Aspie girls’ severe allergic reactions, Erythema Multiforme, is also a rare disorder. In my “rare” kind of love, I began building awareness by passing out blue jean ribbons (the symbol for rare [genes] disease) and sharing on social media. I then began putting the support of our organization behind Rare Disease Day as official Partners because of the parents we serve.
Parents generally love their children with an unspeakable fierceness. We who are raising children with special needs persevere through even more. By the power of the Holy Spirit, we can all have a RARE kind of love – one that makes awareness come to life through our faith and public advocacy. One that perseveres despite often being a lone voice, and one believes ALL things are possible through Christ who strengthens us.
To learn more about World Rare Disease Day, February 28, 2014, visit the US website at http://rarediseaseday.us/ and The Global Genes Project.
Barbara Dittrich
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