We first found out of Sofia having Cystic Fibrosis when I was 3 months pregnant. Sofia’s struggles with CF started from day 1 with weight loss and constant stomach pains. She was put on enzymes at 8 days old, we would have to open the capsules and pour the little pellets into apple sauce; can you imagine feeding apples sauce with little hard pellets to an infant? Quite the challenge….
As a toddler she loved to climb and run all over, outlasted most her age. So much so, that one of her doctors suggested a helmet to protect her head because every time we had an appointment she’d show up with a bump and a story. She loves to challenge, when she was younger if you scolded her she would just smile and laugh until you were compelled to laugh, this by the way hasn’t changed much now she’s a great negotiator!
Her lung struggles escalated when she was 3 years old. Since then she’s had more than 20 procedures, to be honest I’ve actually lost count could be more. At 5 years old she had 5 hospital stays of more than 10 days each, including a trip to Boston for a second opinion on treatment where we flew back with oxygen because her lung function wouldn’t stabilize. She always makes the best of wherever she is, capturing people’s hearts.
Thankfully, together with her doctor’s care (led by Dr. Martinez), amazing support staff in the clinic (especially Cheryl Kushner, who we love dearly!) and wonderful caring nurses at 3Central in Joe DiMagio she’s been able to maintain good weight and has had much less hospital stays, down to 2 a year for the last couple of years.
Sofia is a vibrant, beautiful and spunky child that always tries to make the best of her circumstances. She has a very rigid daily schedule of multiple nebulized treatments with 40 minutes of respiratory therapy twice a day and takes about 20 pills throughout the day. Her focus has always been on living a normal life; playing with friends. She has a positive spirit and energy that I have Hope & Faith will never change.
Cystic Fibrosis is a progressive genetic disease, blind to the eye, attacking multiple organs. We’ve had great strides with new therapies and medications that the Cystic Fibrosis Foundation has been instrumental in the development. Unfortunately, there are still many young lives lost in the fight.
Please join us in the walk as a team member where you can raise funds through your friends and family, donate directly with the button below or simply share our story and create awareness to those you feel would be interested.
Help us find a cure!! It will save many lives that are struggling with this disease, including our Sofi!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.