Life Changing Treatment for Guatemalan Girl

Categories: Family Stories

Diana & Natalia Lucia-Galindo

Diana & Natalia Lucia-Galindo

Can you imagine how heart wrenching it would be to say goodbye to your newborn child every day, not knowing if she would live to see the next day? This is what Diana Lucia-Galindo of Guatemala endured, after her daughter Natalia (Nati) was born prematurely at 30 weeks. Suffering from a multitude of health issues including heart, eyes, and infections, the chances of Natalia surviving were very poor. It was only Diana’s faith and the support of her mother Ana Moritza-Deleon that she was able to get through those emotionally exhausting first few months. She also received support from Facebook friends around the world who were praying for her daughter, and to this day she believes that the power of prayer pulled Natalia through.

 

After baby Natalia was released from the hospital in Guatemala City, her immune system was compromised and she required quarantine for a year to protect her from germs that might kill her. She was given music therapy, occupational therapy, physical therapy, and eventually, horse therapy. Diana was concerned that Natalia was not reaching the normal milestones for a child of her age, so at 20 months old, she took Nati to see a neurologist, who diagnosed her with cerebral palsy. This was a devastating blow for the family, who had hoped that Natalia might eventually get better and live a normal life. Now Diana had a basis for her fears, finally understanding why her daughter didn’t start to crawl until 15 months old.

 

After receiving this upsetting news, Diana cried for an entire week. The doctor suggested that Nati stay in bed with her arms and legs restrained, predicting that the child would never walk or talk. He expected that Diana would have to be on duty 24-hours a day, or hire professionals who would do extensive therapy, but at a cost too great for the family. Diana persevered and took Nati to therapy seven days a week. Those days were exhausting, both emotionally and physically, for both mother and daughter. Nati cried during every therapy, which in turn made her mom cry, as she struggled to rationalize her reasibs for making her little girl suffer.

 

The bright light amidst this turmoil was ballet classes. Although Nati is limited in motion, she far exceeds the other children because she truly believes she can dance. Her teacher says that Nati is dedicated to dance, an attitude that sets her apart. “Nati is a champion and she is so brave”, her mother exclaims.

 

During one of the family’s visits to the hospital, Diana decided to research doctors working on Cerebral Palsy treatments and came across Dr. Roberto Sosa at Johns Hopkins All Children’s Hospital. Guatemalan born, Dr. Sosa makes annual visits to his native country to help his fellow countrymen, often spearheading efforts to bring children to Florida for specialized treatment. In Nati’s case, Dr. Sosa made immediate arrangements for the family to visit him in January 2015. This was all-expense paid visit with Therasuit therapy for three weeks.

Another visit to Florida in September 2015 for therapy produced remarkable results. The therapists constrained one of Nati’s arms to teach her brain a more effective way of using her limb. This triggered a response so dramatic that it changed Nati’s life. In just three days, she began to eat normally, but differently than she had ever before. She began asking for ice cream and yogurt, two foods that previously made her nauseous. She also began talking, a big surprise to her family when she returned home to Guatemala, who only knew a little girl who didn’t even say “mommy”. Over the next two months Nati began to have lots of milestones, reaching goals her family thought were impossible. One year after that first therapy, Natalia is a changed girl. She is outgoing and chatty, overcoming her lack of English skills by learning simple phrases like “Hi, how are you?” While movement is still difficult, she still tries to run and climb like other children, and is getting better at it every day.

Nati and Diana’s love for Ronald McDonald House is beyond expression. The staff and volunteers enjoy having this delightful little girl who chatters away, while her mother or grandmother follows behind. The family feels at home in this special place, and have paid this kindness forward by helping out another Guatemalan family staying at the House; taking them in their rental car to beaches and parks, baseball games and museums.

Diana had known about Ronald McDonald House through friends who stayed when their triplets were born, but never expected the unconditional love and support she receives at the House. Diana comments, “It’s hard to say goodbye because although we are happy to go home, we are sad to leave this amazing place. It’s a hard test that God has given us, but he always sends angels to help out, and Ronald McDonald House has many angels.”

While the Therasuit therapy is incredibly helpful for Nati, it is also expensive since Diana’s insurance does not cover it. Ideally Nati would have two (four week) Therasuit sessions each year, but that may not be an option in the coming months. The option of surgery once Nati turns six-years-old may be an option, but is still too far in the future to consider. In the meantime, she has been fitted with new braces to help her progress with walking. The doctor had wanted to cast her leg during this visit, but unfortunately that would require a six-way stay, far too long for the family to be away from home and Diana’s work as an event planner.

The family’s stay at RMH has also made a big difference in their outlook and perspective. Meeting other families whose children have far more serious issues has made an impact and Diana and her mother now look at Nati’s condition in a much different light. No longer does Diana feel sorry for herself, instead feeling great compassion for the other families staying at the House, and wishing she could help them. RMH provides much greater blessings than a place to stay and food to eat; it provides the comfort, caring and compassion that only other families, generous-hearted volunteers and amazing staff can deliver.

 

THERASUIT TREATMENT

The TheraSuit Method® was created by Izabela and Richard Koscielny (Physical Therapists and parents of a daughter with Cerebral Palsy). It is a holistic approach for those afflicted with neurological disorders like Cerebral Palsy, Developmental Delays, and Traumatic Brain Injuries. TheraSuit Method® is based on an intensive and specific exercise program. Elimination of pathological reflexes and establishing new, correct, and functional patterns of movements is of significant importance.

Author: RMHC Tampa Bay