Living with NF: Meet Allie and Jamielee
Allie was three months old when she began her SickKids journey. Jamielee was 12 months old. Both girls were diagnosed with neurofibromatosis (NF), a genetic disorder that affects the nervous system. People with this condition develop neurofibromas (benign tumours) along their nerves. It can also affect the development of non-nervous tissues such as bones and skin. Symptoms range from very mild to quite severe and complications may occur over a person’s lifetime.As May is neurofibromatosis awareness month, Allie and Jamielee wanted to take this opportunity to share their SickKids experience and educate people about what it is like living with NF.
“NF is complicated,” said Allie. “I’ve had multiple surgeries, tons of MRIs, lots of hospital stays. I visit SickKids quite often and have been seen by more than ten clinics here as a result of the other health complications that have arisen from my NF diagnosis.”
Jamielee’s mom, Leanne, adds that, because those diagnosed with NF are all affected differently by the condition, treatments vary for each case. For Jamielee, this has included chemo for her brain tumour, surgery to remove a fibrous type tumour off her leg, eye tests every three months, MRIs every three months as well as psychology tests.
“In the last few years, we have been at the hospital weekly for treatment,” said Leanne.
It was through a mutual friend at SickKids that Allie and Jamielee first met, and from there, developed a supportive friendship that both girls have come to appreciate very much.
“It was amazing to meet someone who understood what I was going through,” said Allie. “Our friendship is pretty unique. We often meet up during times when we have clinic appointments, scans, chemo … whatever we may be there for that day. We always end up having a blast with one another, whether we’re having lunch, playing a jelly bean challenge or just talking.”
“Jamielee has had a hard time making friends outside of SickKids, but she really connected with Allie from the moment they met,” said Leanne. “Allie comes to support Jamielee during her chemo treatments and other appointments. She has been a great role model for Jamielee.”
When we asked Allie and Jamielee what they would want to share with people who may not know about NF, one of the top things both girls wanted people to know was that NF is not contagious.
“Some kids are afraid they might catch something from me,” said Jamielee.
They also want people to know that, just because they may look ok on the outside, it doesn’t mean that they are.
“When I tell people I have NF, a lot of them will jump on Google to see what it’s all about and they’ll see the images of some of the extreme cases of people with external symptoms,” said Allie. “I have to explain to them that not all people affected by NF are impacted on the outside. For some people, like me, the tumours are all on the inside and they cause me a lot of pain and make things tough for me. NF isn’t a straight-forward condition. Cases are not the same and each kid diagnosed with NF faces their own battle.”
Jamielee echoes this sentiment. “I may look ok on the outside, but I have constant pains in my legs, back and stomach, and there is nothing I can do to help it.”
Through all the challenges they have faced and the multitude of appointments they attend, both girls have been able to appreciate the positives of their SickKids experience.
“SickKids doesn’t feel like a hospital,” said Allie. “All of the staff try so hard to make things as easy as possible for us. From drawing a little smiley face on our band-aid to help cheer us up, to a nurse just letting me vent to her about a tough day during a long hospital stay. They just know how to put a smile on your face while also pushing you in positive ways to help you feel better.”
“We have met so many families that are like extended family now,” said Leanne. “All of Jamielee’s doctors treat her with so much respect. I think Dr. Bouffet is her favourite. He talks to the kids at their level and is so calming. He is very pro-active when there are any concerns, and is one of the most patient men we have ever met.”
Through all their experiences at SickKids, Allie and Jamielee have not only learned a lot about themselves, but also the hospital environment that has become like a second home to them. And they have this advice to give to kids who are just starting out on their journey at SickKids.
“When you are at SickKids, you are not fighting alone. SickKids means family and support. Even when you are getting poked, or having surgery, or taking a medicine that ends up not making you feel well, know that the reason why this is all happening is because the people around you are trying hard to make you feel better,” said Allie.
Jamielee adds, “I would tell them it’s going to be alright. The nurses and doctors are so good. They make sure to explain all the procedures to you to make it less scary. Meeting other kids also helps you to get through the journey. SickKids has given me hope that I have a good future ahead of me.”
“It was amazing to meet someone who understood what I was going through,” said Allie. “Our friendship is pretty unique. We often meet up during times when we have clinic appointments, scans, chemo … whatever we may be there for that day. We always end up having a blast with one another, whether we’re having lunch, playing a jelly bean challenge or just talking.”
“Jamielee has had a hard time making friends outside of SickKids, but she really connected with Allie from the moment they met,” said Leanne. “Allie comes to support Jamielee during her chemo treatments and other appointments. She has been a great role model for Jamielee.”
"It was amazing to meet someone who understood what I was going through.”
“Some kids are afraid they might catch something from me,” said Jamielee.
They also want people to know that, just because they may look ok on the outside, it doesn’t mean that they are.
“When I tell people I have NF, a lot of them will jump on Google to see what it’s all about and they’ll see the images of some of the extreme cases of people with external symptoms,” said Allie. “I have to explain to them that not all people affected by NF are impacted on the outside. For some people, like me, the tumours are all on the inside and they cause me a lot of pain and make things tough for me. NF isn’t a straight-forward condition. Cases are not the same and each kid diagnosed with NF faces their own battle.”
Jamielee echoes this sentiment. “I may look ok on the outside, but I have constant pains in my legs, back and stomach, and there is nothing I can do to help it.”
Through all the challenges they have faced and the multitude of appointments they attend, both girls have been able to appreciate the positives of their SickKids experience.
“SickKids doesn’t feel like a hospital,” said Allie. “All of the staff try so hard to make things as easy as possible for us. From drawing a little smiley face on our band-aid to help cheer us up, to a nurse just letting me vent to her about a tough day during a long hospital stay. They just know how to put a smile on your face while also pushing you in positive ways to help you feel better.”
“We have met so many families that are like extended family now,” said Leanne. “All of Jamielee’s doctors treat her with so much respect. I think Dr. Bouffet is her favourite. He talks to the kids at their level and is so calming. He is very pro-active when there are any concerns, and is one of the most patient men we have ever met.”
Through all their experiences at SickKids, Allie and Jamielee have not only learned a lot about themselves, but also the hospital environment that has become like a second home to them. And they have this advice to give to kids who are just starting out on their journey at SickKids.
“When you are at SickKids, you are not fighting alone. SickKids means family and support. Even when you are getting poked, or having surgery, or taking a medicine that ends up not making you feel well, know that the reason why this is all happening is because the people around you are trying hard to make you feel better,” said Allie.
Jamielee adds, “I would tell them it’s going to be alright. The nurses and doctors are so good. They make sure to explain all the procedures to you to make it less scary. Meeting other kids also helps you to get through the journey. SickKids has given me hope that I have a good future ahead of me.”
