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!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.