A Brave Family Fights For Their Daughter And your Awareness can help!!

Interviewing Elwira Czajkowski was a memorable experience as it optimized the power of motherhood to resolve the worst hardships. In this case, a baby is born with a rare genetic disease that requires a lifetime of care. Elwira’s dedication to her young daughter Gabi is a stunning example of 24/7 prioritization of family. She makes sure that her 3-year-old son Jacob, gets the love and attention he needs despite the incredible schedule she faces. Her husband Walter works at night and will sacrifice much needed sleep to ensure both children’s needs are met. They are a loving family overcoming what was a devastating diagnosis.

Costello’s Disease is a multi-system genetic condition. One changed gene impacts every cell in the body that carries it. Gabi eats through a feeding tube and has a heart condition. Her head is enlarged, and she has poor developmental, intellect and motor skills. She has had spinal cord surgery and is under the care of a multitude of doctors in three separate hospitals. She is being treated for scoliosis, heart issues, lung issues and issues with her endocrine glands. She is monitored for cancer every three months as the probability is greater. Despite all this, Gabi is the sweetest little girl one can ever meet. At 21 months she has not met the normal markers, yet she signs, babbles and gets her point across. Through discomfort and pain, she remains calm and full of wide-eyed curiosity.

Elwira reflects on the frustration of Gabi’s early interactions with doctors. Because the disease was so rare, she had trouble attaining the correct genome testing that would enable doctors to diagnose and treat Gabi properly. She never gave up her fight and with persistence and strength she accomplished the impossible. She describes her frustration with doctors who wanted to operate on the infant before trying less invasive alternatives or the hours of waiting for care with no regard for the baby's difficulties.” Gabi has definitely taught me patience” smiled Elwira. Our journey has gone forward but so very slow in coming that I needed to accept that path”. Her advice to mothers of any child with an illness is to “Do the Research '' and “make sure you have the right network of doctors. .......and that takes a lot of time." Elwira wanted me to acknowledge some of the hard-working professionals she has found. “We use a great person with a great soul who gave me hope for a better tomorrow when I found out about Gabis's diagnosis. Her name is Nancy Calamusa. She travels around the world to help children with severe feeding problems. She is so out of the box and knowledgeable. We don't have enough people like her. We used lots of alternative therapies for Gabi including Craniosacral, Osteopathic Medicine and a special therapy which not too many people know about called the Masgutova Method. We have a great therapist, JerzieAnn who we love. Also, Gabi does speech therapy with Dr Jacki, we adore her.
During summertime we go to Poland to do intensives with Gabi. I feel Europe is more developed therapy wise. Plus, it's “SO MUCH CHEAPER!!!” It's really hard for a great therapist who cares.
Another one is our PT from CentraState, Edita Kotes
She is also one of a kind."

We can help the Czajkowski family by promoting awareness. They are hoping to garner donations to the Costello Disease Foundation. The address below. Right now, Gabi’s future involves limitations, but new gene therapy experimentation might someday make a big difference in her life and we can help.

https://costellosyndromeusa.org/donate/

Costello Syndrome Family Conferences | Costello Syndrome Family Network (CSFN)