Meet Nathan! This mighty two year old loves to binge watch Mickey Mouse and Shrek, and he recently just learned how to walk! To learn more about his lung transplant, his absolutely AMAZING motor skills, and the wonderful community his family found through social media, read the interview below!
1. To start off, can you tell me a little bit about Nathan ?
Nathan is 2 years old and he was born with a rare heart condition called Super Cardiac TAPVR. He went for his first open heart surgery at two weeks old, and from the 1st surgery, he developed a very fatal disease called pulmonary vein stenosis. We tried having a second surgery, but that did not help with the PVS. When Nathan was 10 months old, he received a double lung transplant. He had many complications after the transplant and spent over 9 months in the ICU. However, Nathan is truly a warrior, and his obstacles have not stopped him from being the loving, active, and cheerful boy that he is!
2. What would surprise people the most about Nathan?
Nathan is an extremely happy human! Looking at him he might seem a little different, but he doesn’t act that way. You would never know that he has been through so much.
3. What does Nathan love to do? What is his personality like?
Nathan is constantly on the go! He recently learned how to walk, so he’s just all over the place! He loves playing, learning and watching Mickey Mouse and Shrek :)
4. What are some of Nathan's best strengths?
Nathan’s fine motor skills are amazing - we never thought this would be his strength since he’s been sick for so long but he caught up so quickly!
5. What is a recent accomplishment of Nathan?
Walking!!! Just a few months ago Nathan couldn’t stand up, but now he’s a walking toddler. It’s difficult to keep up with him and his vent but we manage to chase him around the house with it :)
6. What are some of your favorite resources as a parent?
Other parents have been such a supportive community, especially families going through similar struggles as us. Social media these days makes it easy to connect with many families around the world.
7. What has Nathan taught you?
Nathan has taught me to alway find the positive in any hard moment and always finding something to celebrate no matter how small.
8. If you could tell the world one thing about Nathan, what would it be?
He never stops smiling :)
Meet Lily! She is a social butterfly whose smile lights up the room, and she loves to make people laugh. In fact, she gives a hilarious eyebrow raise whenever she thinks anyone is crazy! Read the interview with Lily's mother down below to learn about Lily's CDKL5 diagnosis, her love for school, and more!
1. To start off, can you tell me a little bit about Lily?
LilyAnna is 18 years old with CDD (CDKL5 deficiency disorder), which is a rare genetic neurological disorder. She had her first seizure at 3 weeks old and never developed with typical milestones, but it wasn’t until she was 6 that we got the diagnosis of CDD. She is severely delayed in all areas and struggles with epilepsy; however, she loves to eat (especially sweets!), loves to laugh at her family members, and gives a hilarious eyebrow raise whenever she thinks we’re crazy!
2. Can you tell me more about CDKL5 deficiency disorder?
Epilepsy is a huge challenge with CDD. We’ve tried everything: implanted devices, brain surgery, diets, just about every medication possible, herb, and supplements just to name a few. Name it and we have tried it. Movement is also a huge struggle for her. She has apraxia and every single movement she is able to make is extremely hard for her to make. She is also non verbal and her lack of communication can be frustrating for her and us.
3. What is Lily's day to day life like?
Lily is in an inclusive classroom with a wonderful teacher! She usually goes to school all day; however, due to the pandemic, she lost school for most of the year and we aren’t sure when she will
return :( She loves school, and losing that socialization has been really hard for her. She has physical and occupational therapy at home too and we work with her with stretches because she can get stiff. She sees several medical specialists and our schedule is pretty full with all the special people in her life who help make her life manageable!
4. What would surprise people the most about Lily?
Lily has a great sense of humor! She laughs at all the right times and even the very inappropriate times, which shows she really fits in with our family :)
5. When someone meets Lily for the first time, what do you hope they think?
I hope they think she is a bright young woman and talk to her as so.
6. What are some of Lily's hobbies? What is her personality like?
Lily is quiet and laid back, loves movies and sugary sweets, and laughs and makes noises whenever the room is quiet! She has her favorite people and can tell more with one eyebrow raise than most people can with all of their words.
7. What is the most important thing for someone to understand about Lily?
Everything she does takes full effort and intention. If she is tired she can’t communicate. It’s never a lack of her not wanting. Everything she does takes a lot of effort.
8. What is a recent accomplishment/ milestone of Lily?
At 18, Lily recently started raising her right arm in the air. She was never able to do this and we all get a kick out of it when she does it!
9. Are there any resources which you recommend if anyone wants to learn more about CDKL5 deficiency disorder?
CDKL5.com is a wealth of knowledge which educates others about CDKL5!
10. If you or Lily could tell the world one thing, what would it be?
Don’t sweat the small stuff!
Meet Bristol! She LOVES being the center of attention, and one can always find her pulling pranks on people, playing with Barbies, or enjoying the scenery on long hikes. She has such a positive attitude towards her Cystic Fibrosis treatments and is very aware about the importance of staying safe during the COVID-19 pandemic...how WONDERFUL is it that she can understand all of this at just 4 years old?! Read on to learn more about her brave spirit and mature mindset :)
1. To start off, can you tell me a little bit about Bristol?
Bristol is currently 4 years old. She was diagnosed with Cystic Fibrosis - a genetic condition that causes mucus and secretions to be thicker than normal - a week after birth following a bowel obstruction called meconium ileus that required surgery at 3 days old. Despite this, Bristol has the sweetest heart. She is very understanding about her treatments and approaches everything with such a positive mindset!
2. What would surprise people the most about Bristol?
Bristol does not know she has Cystic Fibrosis, so everything she does in a typical day is “normal” for her. This includes her nebulizer breathing treatments, using her vest for airway clearance, and taking enzymes before every meal along with lots of other medications and nutritional supplements. Even thought she is just 4, she knows all the tasks that are required of her day to keep her healthy and strong. And as far as she is concerned, everyone goes to the doctor for check ups.
3. What does Bristol love to do? What is her personality like?
Bristol is full of energy! One can always find her singing and dancing, playing with Barbies, dressing up, going on hikes, doing arts & crafts, cooking, and pulling pranks on people. She loves being the center of attention, making people laugh, and has the kindest heart...and she LOVES animals, especially dogs! The only thing she isn’t a fan of is going to bed haha!
4. What are some of Bristol's best strengths?
Her positive attitude and her compliance to her treatments and medications is a huge strength. She’s also incredibly brave and smart! Even with COVID, she’s so aware of what’s going on. She knows there is a yucky germ going around that’s making people very sick and that it's important to stay at home as much as she can, wear a mask when she goes somewhere, and always wash her hands. How amazing is it that at just 4 years old she can grasp all of that?!
5. What is a recent accomplishment/milestone of Bristol?
She recently started home school preschool and is totally excelling!
6. What are some of your favorite resources as a parent?
CFF.org is an amazing resource which advocates and provides resources for people with Cystic Fibrosis. There is also an amazing Cystic Fibrosis community I’ve met through Instagram who I can learn from, speak to, and lean on.
7. What has your daughter taught you?
In life, unexpected and less than desirable situations will happen; however, that doesn’t make life any less amazing and there is beauty in every situation.
8. If you could tell the world one thing about Bristol, what would it be?
She is worthy. She is worthy of an exceptional life. COVID has especially opened my eyes to how people treat others, particularly people with disabilities or medical complexities. Bristol deserves to be able to enjoy life and not have to risk her health just to do anything. She shouldn’t have to “stay at home” because people refuse to prioritize the health of others.