Check out Kim’s inspiring interview and find out how she courageously made the decision to adopt her son who has hemophilia.
1. Tell us about yourself.
I am married, have a blended family with seven (now mostly adult) kids and I work as a librarian. My son, Mayur, is a moderate-to-severe hemophiliac who I adopted from India when he was 10. I was hesitant at first to actually choose a child with hemophilia but I talked to my sister, Heidi, who works at HF Healthcare and she had amazing stories of the courage and can-do attitude of the patients she has worked with over the years and I found it very inspirational and encouraging. Based on the information she supplied me with I felt very comfortable adopting him and I have been blessed with a very happy and healthy young man!
2. What setbacks have you had along the way?
We have had very few set-backs, thank goodness. He only received factor in India when he had a bleed and wasn’t used to infusing regularly before he got here. At first he didn’t understand why he had to take it if he didn’t have a bleed. This went on for a while. But we and the doctors talked to him and when he went away to camp at the Painted Turtle, he learned to self-infuse, met other kids like himself and it really helped a lot. He has gone to summer camp three times and loves it and now he wants to be a counselor there when he is old enough.
3. What advice would you give someone who needs motivation & encouragement?
The advice I’d give to those needing encouragement is to find a support group, or contact your go-to person who supplies your factor. Also, read up on other kids who have hemophilia or bleeding disorders, or join the national or local hemophilia organizations. There’s so much support and information out there and many people are very happy to lend their time or offer encouragement. I know the owner, JT White, my sister Heidi, and others in HF Healthcare, for instance, are really present and available 24/7 to parents or patients going through rough times, or needing to ask questions or talk. I found that to be the same from pharmacies, doctors, hospitals, the counselors at the camps, etc., as well. It really is like a unique type of family in that hemophilia is a rare disease and people know that and react accordingly with good will and intent.
4. What is the most surprising thing you’ve learned about yourself?
The most surprising thing I’ve learned about myself is that the unknown is more scary than the reality. Before Heidi gave me the facts behind hemophilia (via DVDs, books, pamphlets) and before talking to the doctors and other medical staff, the thought of adopting a child with hemophilia seemed frightening to me, because of all the unknowns and I didn’t really understand what having hemophilia meant as far as day-to-day life. While I realize there are varying degrees and people with very severe hemophilia and inhibitor issues, I have found James’s (moderate to severe) to not be an imposition on his life or his activities in any truly restrictive way. He has his perimeters, he is cautious, he takes his factor, and life goes on. He is like any other boy – he likes computers, sweets, and hanging out in front of his TV!
5. How do you give back to the community?
I give back to the community by participating in various hemophilia walks that are held annually. I have participated numerous times and it’s a lot of fun. There are booths from various vendors with lots of information for the parents and freebies for the kids, and it helps raise awareness for the hemophilia community. People come to together as one and there is much sharing and stories. It’s a very positive experience and very uplifting for kids and their families.
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