Amy and her son Alex share their insights as the mother and brother to Lauren and Tyler, who live with a rare genetic disease of obesity

AMY
I have four children, two boys, two girls. We tend to be busy every evening with some kind of activity. But what really adds some difficulty to our lives, is that two of the children have special needs. They have a rare syndrome called BBS.

AMY
My children were both born with extra fingers and toes. And we knew that that was possibly just a birth defect. But because they had rapid weight gain, and they had cognitive delays, and developmental delays and just a variety of things, we were always searching for something. We knew that there was something going on with them.

AMY
Tyler was bottle fed as a baby. And so I would fix him a bottle and he would drink the whole thing. And then he would continue to act like he was hungry. And I was a new mother, I didn’t know. I just assumed if he acted hungry, then he was hungry. So I would fix a new bottle. And there were times where he would drink that second one and then he would end up throwing it up. Just the whole thing. I knew he was full, but he still acted hungry. And I didn’t understand why.

AMY
When Tyler was about nine years old, I had gone to a women’s conference. Had nothing to do with special needs, or looking for a diagnosis in any way, just a fun weekend retreat. And one of the speakers there was talking about her daughter and showing pictures of her. And I was struck by how similar she looked to Lauren, my youngest with BBS. And then she mentioned that her daughter was born with an extra toe. When this conference was over, I went home and looked up the blog of the speaker and found information about Bardet-Biedl syndrome.

AMY
When we finally received a BBS diagnosis, I felt so much gratitude after so many years of searching, but then I also felt grief and distressed that there was really nothing we could do to help Tyler and Lauren. We really were managing symptoms.

AMY
Having two kids with BBS in our family, as well as two kids without, who are typical, has posed some challenges for our family. But on the bright side, it has really created compassion and empathy in my kids who are not affected with BBS.

ALEX
One of the blessings about having siblings with BBS is that you really get a sense of kids that are struggling and the emotions and the tendencies that come with that. And it makes you a lot more aware and just kindhearted.

AMY
Today, both Tyler and Lauren are struggling with their weight. They are both struggling with vision loss. They’re struggling with loneliness because they struggle to make friends and to fit in with peers their age.

AMY
Because of Lauren’s intense hunger and weight gain, it affects her friendships in that she’s not able to keep up with other kids in physical activity. She’s also quite aware that her body doesn’t look the same as her friends’, and that bothers her at this point in her life. And the other girls her age are noticing also, and 13 years old is a difficult age for girls to kind of navigate those friendships.

ALEX
I think, with kids my siblings age, especially Tyler and Lauren, it’s hard to understand why they’re different. And if I had to say one thing to the peers around them is just take your time, get to know them. They’re the sweetest souls with the kindest hearts. And they’re just like anyone else, they just take an extra second to fully catch up, and that you can still have great conversations with them and still form genuine connections with them. It just takes a little bit more effort and it’s worth it.

AMY
What I would want parents of a BBS child to know is that it is natural to want to search out every solution, every treatment, every possibility, to try to fix your child or to improve their lives. And that’s good, but there will come a time where you just hit a wall and you get a little burned out and you can’t continue to keep moving at that pace. And that it’s okay to slow down. It’s okay to find a comfortable pace to move at that you can sustain because this is a lifelong journey with BBS.

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