Lyla's CF Journey

Before Lyla went to Children's National to get a diagnosis, our family had no clue what was going on. We were all scared and confused about what was happening to a daughter and sister. Lyla was diagnosed with Cystic Fibrosis when she was around 4 years old. It was scary at first knowing Lyla had developed a genetic disease that will impact her for the rest of her life. But knowing we were in good hands at Children's National, our fears were slightly alleviated. 

Lyla has been admitted to Children's Hospital more than 20 times throughout her life. Her hospitalizations could be a minimum of 2 days ore more than a month. It can be scary for not only the patient but also the family members when admitted. However, the staff at Children's National helped everyone feel more comfortable and help get through the process. 

Throughout her stays, Lyla has always kept a positive mindset and never fails to make her family and the hospitals staff members laugh. She has made 5 of her own joke books donating them to the hospital to help make other patients laugh. 

Having Cystic Fibrosis has the largest impact on the patient, but it can also impact family members. It can be extremely stressful for parents since they may not know what to do or have the correct funds to go to the best hospital or get the best treatments. It can also be very scary not knowing how long their daughter may last. It takes a huge toll mentally and physically, especially when worrying about their kids and how they are going to make everything work. 

As a sibling, it is terrifying not understanding what is happening. You can go days or weeks only being able to see your sister or brother virtually. It can create excess stress and instead of worrying about school or sports, you spend large amounts of time wondering what is happening and if they are going to be okay. You also may stay at multiple houses, being bounced from one friends house to another. Not staying at your own house during a scary moment is tough with everyone asking if you are okay when you are obviously worried tremendously yet you try to keep a brave face for your family. 

Lyla has gone through multiple treatments to find what works for her. Each Cystic Fibrosis patient has treatments that work for them and others that do not, yet there is still no cure.

1. Feeding Tube 

• She tried a feeding tube when she was younger. She no longer has it but now has a double belly button from the scar it left. 

2. Medications 

• She has tried numerous medications such as Trikafta, Zen-pep, Spiriva, Prevacid, Miralax to help with indigestion, and she has tried loads of steroids which impact her mentally and physically. 

3. Inhaler

• Lyla also does inhaled medications by using a nebulizer including, albuterol, budesonide, sodium chloride, pulmoyzme, avtrovent, and dulera. A

4. Antibiotics and pic-lines

• Additionally, she takes antibiotics and recieves pic-lines whenever she has a lung infection including augmentin. Lyla got so used to her piclines that she began to pull them out herself and the doctors were all shocked. 

5. Vest 

• Lyla does a vest which has developed over time. First she had used a vest with tubes so she was stuck seated while waiting for her treatment to be done. But now with technological developments, she now gets to use a transportable vest which she can wear in the car and walking around. The vest and nebulizer are a part of her daily routine and she usually does them twice a day. However, when sick she can do them every 2 hours including at night.