from our Fall 2005 Newsletter   
"Next Year, I'm on the Planning Committee"
says Sarah Rasmussen...



Sarah Rasmussen from Killington, VT, has enthusiastically volunteered for a conference planning committee after attending conferences related to her son's rare diagnosis. Three-year-old Jack has a rare chromosomal abnormality called Isodicentric 15. Sarah and her husband Erik also have a six-year-old son named Kyle.

JackJack participated in the Family, Infant & Toddler Program and Sarah was supported by Family Support Coordinator, Hilde Hyde, in Windsor county. Sarah said of Hilde, "She was perfect. Could not have been more helpful." Initially providing information related to school districts, Hilde also helped her to get Jack's Medicaid application submitted (and approved). 

About a year later, Sarah connected with a family in Arizona needing support through the Parent to Parent national match listserv.

"This is information no doctor can give you; only families with kids like ours can help you know what to do and expect."
The Rasmussen family received conference funding from Parent to Parent two years in a row; the support from the conferences has been critical to them.

Sarah's letter reads as follows:
"Thank you to Parent to Parent of Vermont for assisting me in attending the Isodicentric Conference in Chicago this summer. It was a great conference and I learned quite a bit. Outlined here are my general thoughts and summary. If you need any more info, please feel free to contact me. Also please share this info with anyone you need to. Conference Title: IDEAS: Growing Up Together - 3rd Annual Isodicentric 15 Disorders. I attended this conference as my three-year-old son has a genetic disorder called Isodicentric 15, or Idic 15. This disorder causes developmental delays, seizure disorders, autistic tendencies, speech and motor problems, and cognitive delays. The purpose of the conference was to bring families and professionals together so we could share information on what interventions and teaching models work best for our children, what current medical research can help our kids and lastly, what we can do to help spur further medical research on Isodicentric 15.

Jack and KyleThe conference was wonderful! I met numerous professionals and families with children very similar to our son and learned some proven ways that help to educate him (Applied Behavior Analysis, ABA, has a huge success rate with our kids). This conference helped me fine-tune Jack's IEP goals and gave me the confidence to ask the school system for an ABA specialist to work with our son, his teachers and aide. An ABA specialist was assigned to Jack this summer and she will begin to work with him at the school this month.

I also learned quite a bit about potty training and personal hygiene. This is something we took for granted with our first child but I now realize I have a long road ahead of me with our son with Idic 15. Once again, the other families shared proven methods for addressing these areas and suggested timetables that seem to work well. This is information no doctor can give you; only families with kids like ours can help you know what to do and expect.

Rasmussen FamilyAs for medical research, we did meet the doctor that has our son in her autism study. Last summer Jack was asked to participate in a Dupont Hospital study and it was great to meet the woman spear heading this research project and to have her meet Jack for the first time in person. There is much more research to be done regarding seizures in our kids and for the first time ever a group of doctors came together to see what could be done to look at the correlation of seizures and Idic 15 kids. Our son is currently on seizure medications to control seizures so it was of great value to hear what the doctors have to say and to learn more about seizures in general.

Overall, this conference was the best thing I could have done to help our family to understand some of the issues my son is dealing with now and to prepare for the future issues. This is a bi-annual conference and I plan to attend every time. My goal is to have the whole family go in 2007 as it is being held in Boston and I am on the Planning Committee!

Thank you again for your support and I look forward to working with Parent to Parent of Vermont in the future. If there is anything my family can do to help or support your organization, please call or email me."Jack
Warm Regards,
Sarah E. Rasmussen Y

Parent to Parent has Conference Funding available!
Call our Family Support Coordinators at
1-800-800-4005.
Applications can be taken over the phone.  

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