When Rosie was born, doctors knew something wasn't right.  She couldn't feed even with a bottle. Her brain couldn't figure out how to breathe, suck and swallow at the same time. A specialist came in and taught us how to teach Rosie's brain how to drink from a bottle.  It took a couple of weeks for Rosie's brain to remember what to do. 

 

Rosie was still not progressing as a normal baby.  She wasn't putting on weight even drinking concentrated formula. It was 3 years and a hospital in Boston that found out through blood testing.  Rosie has a mutated form of NF #1. Sickkids Hospital in Toronto told us that they couldn't tell us what would happen to her.  Since she is the only person who has this mutation. We contacted Children's Wish Foundation and took her to Disneyland. 

 

Over the next few years she had several surgical procedures in her throat and mouth.  She had motor skills and developmental delays. She was always picked on in school by other students. Just because she was different. 

 

In 2018, in November, doctors found a tumor in her brain. Since then she has developed several more brain tumors, and one in her right cheek. Every year they were growing. Then in summer of 2020, we were invited by Sickkids to try out a special access cancer drug. This drug wasn't available in Canada. It only came from SickKids.   The drug is called Selumetinib.  It's been able to help stunt the growth of Rosie's tumors. This drug does have very serious side effects.  They can be heart problems, skin problems and many other things.  We have to use alot of bath and body products to keep her from getting very bad skin rashes. So we have to travel to SickKids Hospital all the time. But, without the drug, Rosie would still be 55lbs and not be able to swallow due to the tumor in her face.  She is now almost 16 years old and has finally made it onto the growth chart. 

 

Rosie still has several brain tumors, a tumor in her face, a mild heart murmur, asthma, allergies and ADHD. Rosie also has severe developmental delays. She misses school alot due to appointments and she's immune compromised. 

 

Since Rosie needs a constant caregiver I'm unable to work. She can't be left alone. Rosie will always be in need of a caregiver. She's unable to make complicated decisions. She doesn't understand money or time or space. Rosie is a very loving and happy girl. I do my best to make her feel happy and safe. Both at home and school.  Since anything could happen to her condition at any time. She will always have to have hospital treatments. 

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- Nicole Pillsworth