Shelly Burr is a Family House mom - she stayed with us in 2009 while
undergoing a clinical trial at UCSF to treat her in-utero daughter’s
spina bifida. In honor of her daughter, Shelley is doing the “We Run
with Kaitlyn” fundraiser, with a goal of raising $20,000 for Family
House! So far, she’s raised over $5,000! - thank you to Shelley and her
wonderful family and community! Learn more about their fundraiser at
http://www.werunwithkaitlyn.com/ and watch a great video they made featuring Kaitlyn:
https://youtu.be/7YA8HOa8v9U
Q: Where were you living when you Kaitlyn was diagnosed with Spina Bifida?A: Humble, TX (a suburb of Houston)
Q: Is she your first/only child?A: No, she is our third. Damon is our oldest -11, Audrey is 9, and Kaitlyn is 7.
Q: Can you tell me about the MOMS study?A: MOMS stands for "Management of Myelomeningocele Study." It was a clinical trial that tested whether a prenatal (in utero) surgery to repair myelomeningocele (the birth defect more commonly known as spina bifida) was worth the risk. The surgery involves taking the fetus out (partially) to repair/close the lesion on the spine, then put her back in for the duration of the pregnancy. The risks are many, but the most concerning was the risk of premature delivery, since the uterus is compromised by the surgery, the babies are almost always delivered pre-term. But the potential benefits are also promising, so they created a clinical trial to study it. Half of all participants were randomized to the prenatal group, and the other half were randomized to a control group (which meant simply waiting until delivery and then doing the surgery after birth, which is the normal practice with spina bifida).
Q: What was it like when you first came to Family House? A: We were in quite a whirlwind at the time, [with Shelly] having recently undergone a very invasive and painful surgery. We had stayed at a hotel for about a week while we waited for a room to open up at Family House, and that hotel room was pretty cramped and difficult, with no kitchen or comforts of home. Finally arriving at Family House was great, as it gave us so much more peace of mind, knowing that we were going to stay there for the next few months. Having a stable place to stay, where our older two children were welcome, was an enormous blessing during the hardest time in our life.
Q: Do you have any especially nice Family House memories from that time to share?A: The best part was the friendships we made. It was a blessing to be around so many other people who were going through some very difficult times as well, and we were able to support one another. In our case, the condition that Kaitlyn would have was certainly still scary and worrisome, but we also met other families that were going through things that were more painful, and that really helped us get perspective. In a way, by interacting with other families who needed our friendship and support as much as (or more than) we needed from them, it helped us to not be so caught up in our own self-pity and stress; we were able to reach out beyond ourselves and feel like we all were going to get through this together. The staff there were always kind, always compassionate. We felt so loved.
Q: What has Kaitlyn been through since she was born, in terms of treatment and therapy?A: She has done so much better than her original prognosis predicted. That prenatal surgery was the only surgery she has ever had; she still has bladder and bowel issues, and we catheterize four or five times daily and do an enema every evening. Most kids with spina bifida have dozens of surgeries throughout their lives; Kaitlyn has been very blessed. She has done a lot of physical therapy over the years, started crawling at 1 and walking at 2 1/2, and can now even run on the treadmill (fastest mile was 17 minutes). Academically she is below average but not too far; she's now in first grade and does some extra tutoring on the side, and we hope she will be able to keep up.
Q: How is she now?A: She is fantastic. She is healthy and happy, has friends, goes to school. She still does physical therapy, but otherwise is a very normal child with a silly sense of humor, and is a fun, cute and happy member of our family.
Q: Can you tell me about the idea for the “We run for Kaitlyn” fundraiser?A: Originally it came about because I was planning to participate in a marathon and heard about a charity challenge offered by Reason2Race, where participants who were running with a fundraising cause could compete for and win some extra prize money. Our thoughts immediately turned to raising money for the national Spina Bifida Association. We called it "We Run For Kaitlyn" mostly because she represented all children with spina bifida and we were doing it for all of them.
Q: How is that changing now that it is “We run WITH Kaitlyn?A: As Kaitlyn has grown older she has gotten better at walking and now running on the treadmill. She is quite ambulatory and is old enough now where she could do the 2K, which is the shortest distance offered at The Woodlands marathon event. We thought it would be a fun idea to have her participate and make this about all of us running for something else. Family House stood out to us as a charitable cause that we could all support, especially since it was such a part of our lives.
Q: Do you have any advice for a family whose child has just been diagnosed with a life-threatening illness?
A: Yes: first of all, that you are not alone. It probably feels so overwhelming and scary and unfair at first. The best way to get through all of those crushing emotions is to connect with other people. Talking to a live person, whether by phone or online, can bring some understanding and sympathy from people who know what you are going through. It can make things worse if you just try to handle it alone, looking at scary pictures or stories of faceless strangers on the internet. So if you try to find new friends, look for and find new groups on Facebook and reach out to people, you will find so many people who have some idea of what you are going through and have the first-hand knowledge and experience and motivation to help you get through it.
Q: What’s next for Kaitlyn and the rest of the family?A: Kaitlyn is looking forward to another great year of school as she dives into first grade. She'll keep on doing therapy and extra tutoring. She and the rest of the family are also going to be putting in a lot of time and effort into a bunch of fundraising efforts as we lead up to the races on March 3 and 4 of next year. In a year or two, we hope she can learn to catheterize by herself, which will help her become more self-sufficient. She will keep on growing and becoming more independent and we have high hopes for her. Our time in San Francisco changed the trajectory of her life, and for that we will forever be thankful.
Learn more about their fundraiser at
http://www.werunwithkaitlyn.com/
