Challenges Of Having A Sibling With A Rare Disease

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Challenges of having a sibling with a rare disease

Hello Everyone,

My name is Afsoon Movahed and I'm a Hope For HH intern and guest blogger.

Today’s blog is an incredible story of love and compassion. So often we focus on the individual with a hypothalamic hamartoma (HH), but we know that HH impacts an entire family. Siblings often have to handle fear, disappointment, jealousy, and still try to show unconditional love during the complex and bumpy journey that is HH. I had the chance to speak with Brittany and ask her about her experience with her sister, Taylor.  Read Taylor's HH story here.

Tell me about your connection to HH.

It's hard for me to remember a time when my life didn't involve HH. Taylor is 6 years younger than me and what I remember most from her early years is that she had a wonderful laugh. Even strangers would remark about it. It was so adorable and I'm sure now she would have been a viral video because it was so contagious. I don't remember when she was diagnosed, but I do remember going to lots of doctor appointments that I didn't really understand because, to me, she was just my fun-loving sister. I do remember the day that she left for surgery. It was the first time we had ever really been apart. I was standing on the porch of our house with my grandmother, watching them drive away. I was able to hold it together until I went back into the house, which seemed so large and empty all of a sudden. That was the first time I broke down because of HH.

How did having a sister with HH impact your life?

It's interesting that it is difficult for me to answer that question. At first glance, I want to say I don't really know because she was simply my only sister and so I didn't know any different. We just did all the sister things that you do and had (and continue to have) wonderful times. 

On a deeper level, though, it has very much impacted my life and most notably my career path. I don't think I would have considered going to medical school if Taylor had not been diagnosed. I wanted to help other families who were going through difficult times in the way that her doctors and their teams were able to help us. At first (and for many years) I wanted to be a pediatric neurosurgeon. This was until I figured out that I wasn't cut out to be a surgeon (as in, the work-life balance is not what I needed). Then I discovered my other career passion, palliative care. I'm currently finishing my last year of training to specialize in helping patients and their families when going through any sort of serious illness (like HH) and doing some extra training in pediatrics to hopefully be able to help families navigate the difficult terrain that is serious childhood illness.

What words of wisdom do you have for parents that are worried about the impact on siblings when one child has HH?

My parents did a great job with making our home feel like it was just a normal home. Looking back, I can't imagine what they were feeling when they allowed us to do things like continuing to race dirt bikes after Taylor was diagnosed. It must have been absolutely terrifying, but for Taylor and I, it was so important. We were just regular kids. Yes, sometimes she would laugh a little too loud or have a fancy helmet made after surgery. But overall, we were just a normal family. I'm not sure how my parents pulled that off, but it was so important to both of us growing up that we were never looked at as a "different family."

The other thing that my parents did really well with was not having tunnel vision on Taylor. They still supported me in all of my activities wholeheartedly. There was never a time when I felt left out or like she was more important. Again, looking back, it seems like a superhuman feat that they were able to do this and I know it must have taken a personal toll for them to have to expend so much energy on both of us, but I think it was one of the really beautiful things that they were able to teach me about being a parent. You love your kids and do what you have to do.

What is your fondest memory of growing up with your sister Taylor?

Oh my gosh, there are so many to pick from. There was the time that we thought it would be fun to lock ourselves in the trunk of the car, then there was her birthday party where everyone was on BMX bikes, then there were all the motorcycle races that we did together. I think my favorite is watching her grow up on video games.

There was a time where Dad and I would give her a controller that was unplugged (she was only about 3) and tell her that she was "the red one" so that she wouldn't feel left out. And somehow, that turned into she and I playing Mario Kart 64 (where 2 people are in the same car) and rarely losing a race. I think it reminds me of life. She is great at some things (like driving the kart) and I am great at others (throwing bombs and hitting people from the back seat). Together, we have never lost a championship. You can't be good at everything, but you can be great at some things and you just have to surround yourself with people who boost you up and make you great together.

What was your greatest challenge growing up in a home impacted by a child with a rare disorder?

There were times when I felt very isolated. I'm specifically thinking of when she had surgery and was gone for 2 weeks. During that time, I didn't have anyone that I could really talk to who understood. My friends had no clue what was going on. My teachers had never heard of a HH and didn't know how to help me. I had my grandmother with me, which was great, but she was also trying to make sense of all of this and I didn't want to burden my parents, who I imagined in a small hotel next to the hospital in a tiny room trying to make things normal. It was very lonely for those 2 weeks. I remember Mom and Dad calling to tell me that she had done well in surgery and I was so excited to be able to talk to her! Unfortunately, I wouldn't be able to talk to her for about a week. Those were the longest days of my life. 

Was there anything you couldn’t do?

Not really. I will preface this by saying that in most families, it is the younger sibling that wants to be like the older. In our house, it was reversed. Taylor was daring and fun-loving and everything that I wanted to be but didn't know how. So, growing up, I mostly followed her lead. She started racing motorcycles, so after about a year, so did I. She started playing softball and after about a year, so did I. I never learned to skateboard like her, but that was mostly because I am very clumsy. Where Taylor went, I followed. And there was nothing that she couldn't do. In addition to all of her daring hobbies, she also graduated high school on time, got an associate's degree and now helps run the family business while also having a photography business on the side. We never felt like there was anything either of us could not do.

Reflecting on Brittany and Taylor's story

Through good parenting and sisterhood Brittany and Taylor got through their HH journey together. Taylor had endoscopic removal when she was 8 and Brittany was 14. Brittany’s story should inspire us all to continue to thrive as a family and be there for each other even when encountered with such a substantial obstacle as HH.

I had the privilege of writing Brittany's story. I hope you can learn something from Brittany’s story as I did from interviewing her. I am also interested in the medical field for a future profession, but there are so many options. Brittany certainly inspired me to take caution when committing to a profession because you never know what's out there waiting for you and you can always change your mind. As a sibling of two brothers, Brittany also taught me a bit more about the spirit of family and the commitments of parents, something I think I needed to be reminded of.

To learn more about our guest blogger and Hope For HH intern, Afsoon Movahed, click here.