"Alexandria’s Story: How MPS Changed My Life"
By Alexandria Young, MPS Sibling
This is my story about my sister and how she changed my life and many others. My sister’s name is Mikal Sue Besse. She is ten years old, and she was diagnosed with Sanfilippo syndrome (also called MPS IIIA) at the age of four. Sanfilippo Syndrome is a genetic disease caused by a deficiency in an enzyme used to replace and make materials that are broken down for disposal. This enzyme deficiency causes lots of problems. For example, my sister is nine but in terms of her mental age, she is around six months old. Mikal is nonverbal and has trouble walking and sleeping (there are lots more but to much to even list).
Symptoms of Sanfilippo are behavioral problems, appearance differences, diarrhea, full lips, heavy eyebrows that meet in the middle, sleep difficulties, stiff joints that may not extend fully, and walking problems. There aren’t treatments but there are things that can help with the sickness. A few things we do is we got a feeding tube for Mikal because she was having a lot of problems with her weight. She was losing a lot of weight, and it was really scary at first but we got used to it. Also, these children who have this disease are on a lot of medicine to help with certain things like seizures, sleep, pain, walking and much more.
With Mikal’s disorder, she has problems with eating. We recently got a feeding tube, which is pretty much a tube in her stomach through which drinks and mushed food can travel. Mikal’s weight is really bad. She weighs sixty pounds - that's why we got a feeding tube so she will gain weight. After she got the feeding tube, she got really sick. Her tube was bleeding and my mother and Mikal were in the hospital for a week or so.
People always ask how Mikal is or how my mom is, but no one really thinks about the siblings. Life is honestly rough and really hard - I hate going through this. Every year there is a conference for the disease for the families to meet and see each other. There is always a get-together for just the siblings to get to know each other and learn more about their siblings, and honestly just to talk about our feelings. Sometimes people ask me what is it like having a special needs sister. Most of the time, I don’t know what to say because it’s rare to have someone ask you that, but the answer to that question is, "Yes, it is hard being a sister to a sick and dying sibling."
Something that is super hard is dealing with people staring at you when you’re with your sibling. People can be very rude and say mean things. It is hard to hear when people ask why families take their special needs sibling out in public. It can be hard dealing with these questions. So next time you see someone with special needs, be nice.
Siblings with a Mission is an international organization established to serve and support siblings of individuals with special needs. All images are found on Google images and are solely used for education purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
By Alexandria Young, MPS Sibling
This is my story about my sister and how she changed my life and many others. My sister’s name is Mikal Sue Besse. She is ten years old, and she was diagnosed with Sanfilippo syndrome (also called MPS IIIA) at the age of four. Sanfilippo Syndrome is a genetic disease caused by a deficiency in an enzyme used to replace and make materials that are broken down for disposal. This enzyme deficiency causes lots of problems. For example, my sister is nine but in terms of her mental age, she is around six months old. Mikal is nonverbal and has trouble walking and sleeping (there are lots more but to much to even list).
Symptoms of Sanfilippo are behavioral problems, appearance differences, diarrhea, full lips, heavy eyebrows that meet in the middle, sleep difficulties, stiff joints that may not extend fully, and walking problems. There aren’t treatments but there are things that can help with the sickness. A few things we do is we got a feeding tube for Mikal because she was having a lot of problems with her weight. She was losing a lot of weight, and it was really scary at first but we got used to it. Also, these children who have this disease are on a lot of medicine to help with certain things like seizures, sleep, pain, walking and much more.
With Mikal’s disorder, she has problems with eating. We recently got a feeding tube, which is pretty much a tube in her stomach through which drinks and mushed food can travel. Mikal’s weight is really bad. She weighs sixty pounds - that's why we got a feeding tube so she will gain weight. After she got the feeding tube, she got really sick. Her tube was bleeding and my mother and Mikal were in the hospital for a week or so.
People always ask how Mikal is or how my mom is, but no one really thinks about the siblings. Life is honestly rough and really hard - I hate going through this. Every year there is a conference for the disease for the families to meet and see each other. There is always a get-together for just the siblings to get to know each other and learn more about their siblings, and honestly just to talk about our feelings. Sometimes people ask me what is it like having a special needs sister. Most of the time, I don’t know what to say because it’s rare to have someone ask you that, but the answer to that question is, "Yes, it is hard being a sister to a sick and dying sibling."
Something that is super hard is dealing with people staring at you when you’re with your sibling. People can be very rude and say mean things. It is hard to hear when people ask why families take their special needs sibling out in public. It can be hard dealing with these questions. So next time you see someone with special needs, be nice.
Siblings with a Mission is an international organization established to serve and support siblings of individuals with special needs. All images are found on Google images and are solely used for education purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
