Why my husband and I are providing matching funds for up to $10,000 in donations to further AXYS’s goals.
Donate Now! – Use the Additional Comments box to add “Myra and Michael’s Matching Funds Campaign.”
Nine years ago, our son was in 1st grade and everything was falling apart. Andrew’s teacher told Michael and I that he had “basically failed first grade,” needed to go to summer school to advance to second grade, and she just “didn’t know what was going on.” Since we had a prenatal diagnosis of 47, XYY, we knew Andrew was at risk for learning issues and we’d already had him repeat kindergarten. By the end of 1st grade, he couldn’t write in his journal like the other kids and he could barely read a few words. We had tried to get services and supports for him in kindergarten, but we were denied, despite bringing information about his condition. When I called the eXtraordinarY kids Clinic in Denver, I was told there was a 3 month wait to be seen. We saw Dr. Tartaglia and the other specialists as soon as possible, and by the time Andrew started 2nd grade, we had a 57 page report from Dr. Tartaglia and the other specialists at Colorado Children’s. The report was written in a language the school understood and we were given every accommodation and service we requested.
Long waiting lists and the fact that traveling to another state is out of reach of many families motivated AXYS to form the AXYS Clinic and Research Consortium (ACRC) two years ago. The AXYS Board of Directors had this dream: we wanted everyone with an X or Y Variation to have access to a multi-disciplinary clinic. The Board determined that AXYS didn’t have the funds and we had to place that dream on hold. Michael and I decided at the 2015 Conference that we would donate up to $10,000 in matching gifts to raise the money. Today there are 7 multi-disciplinary clinics seeing patients, 2 specialty clinics and 3 more clinics organizing to open in the near future!
We are thrilled and excited, but there is a huge hole in the care of those with X and Y Variations. Almost all of the current clinics are unable to see adult patients because they are pediatric clinics. At every conference, and when I answer Helpline calls, adults ask, “what about us?” and parents ask, “what about my 23 year old?” Our 16 year old son will soon age out of the wonderful care he has received from Dr. Tartaglia and her team—what happens to him then?
The new non-invasive prenatal screening of maternal blood (cell free DNA) is putting an increased burden on both the clinics and the AXYS Helpline. Another AXYS goal is to have our Helpline answered by a live person instead of the current system where the caller leaves a message and a volunteer returns the call. AXYS also wants to provide copies of our informational booklets and pamphlets to the existing clinics, obstetricians and Genetic Counselors. The ACRC has agreed to write “Consensus Documents” which will contain the “best practices” in treating X and Y Variations. These documents can be taken to local providers of care when a clinic visit is not possible. Consensus Documents will also maintain a standard of care among the clinics.
Michael and I want to see the dream fulfilled of accessible multi-disciplinary clinics for all (including for adults), better support for the newly diagnosed, and improved informational materials. Of course, fulfilling these dreams costs money. For example, AXYS pays the expenses for the ACRC clinic directors to meet each year to share information and ideas, as well as plan research. We are providing matching funds for up to $10,000 in donations to further these goals. Michael and I want each and every person with an X or Y Variation to have access to the wonderful and life-changing care that Andrew has received. Together we can do this!