Samantha, was born on July, 2008. She spent a few days in the NICU because her lungs were not developed enough. When Sammy went home, her breathing was still not normal but the doctor said it would get better with time.
During her first few months Sammy had no major developmental problems, however she was not crawling or eating like other babies her age, but the doctors expected her to catch up. At eight months old, Sammy started having colds and respiratory problems which eventually turned to Pneumonia. Her appetite decreased and her energy was not the same. By her first birthday she was able to stand up, walk a few steps, eat a few bites and say a few words; she weighed about 24 pounds.
Then her respiratory problems worsened and she started losing weight. October 2009, at 14 months old, she was admitted to the hospital with Pneumonia and a Sinus infection. A few days later she was diagnosed with Surfactant C Deficiency, a very rare genetic lung disease associated with respiratory failure and interstitial lung disease. This deficiency also prevents her lungs from fighting any infections and viruses. She spent about five weeks in the hospital and lost eight pounds (a third of her weight), was fed through IV, and got so weak that even staying awake was hard for her. During the next year Samantha had to be hospitalized three days every month to get her treatments. She was on oxygen 24 hours a day for about eight months.
Due to her rare lung condition even a simple cold could be fatal for Sammy. In addition, she couldn’t get her shots for MMR (measles, mumps, and rubella) or Chicken Pox, forcing us to avoid contact with other people (especially children) as much as possible, which meant staying away from malls, parks, playgrounds, parties and any sort of crowds.
When she was about 18 months, she could not crawl, walk or even stand up by herself anymore, she did not eat a single bite, she was being fed by bottle only while she was asleep, and she only said a couple of words…..then, she was referred to Early Steps.
I knew my daughter needed therapy but I also knew she couldn’t go anywhere she would be exposed to viruses or illnesses. It was so great to find out that the therapist was able to come to my house and show me how to help my child.
Kerry Cavallo, the founder of Bella’s Angles, made me believe again that there is light at the end of the tunnel. She shared her own personal experiences with me, which helped motivate and give me strength to press on. She also shared some great information on how to get on with day to day life, while having a special needs child.
With a lot of dedication and effort from the therapists, Sammy succeeded to crawling. She now can walk, run and jump, in her own way. Her muscles are much stronger and she is a very active little girl. She also now eats many different types of foods and can express all her thoughts through words.
In addition to the amazing support we have received from Early Steps, we have been blessed to be a part of Bella’s Angels. They have given us that extra support to be able to take necessary medical trips helping us with things that seem normal like rental car, gas, hotels and meals that to a family with special needs is another additional expense that makes getting the best care for your loved one difficult.