Raise money to help the family with financial situation, rebuild their home and also build awareness of cystic fibrosis and inform the public.
The addition of a child to a family is a gift regardless if that blessing is through a birth or an adoption. Hannah, the first adoption and fourth child, is no exception. She had a beaming smile and captivating demeanor; yet, she was in a battle against the perils of Cystic Fibrosis. Hannah received an early diagnosis which is significant in fighting the harsh effects of the disease; however, she had not been given the prescribed medications or adhered to the intense treatment program. As a result of the poor care Hannah was very ill. It is at this juncture our family embarked the crash course in understanding Cystic Fibrosis, a deadly disease with no cure, and seeking medical intervention to stabilize her condition.
In the first few years after Hannah came to the Hewitt family, she endured abundant hospital admissions, a multitude of surgeries and an intense home treatment program. Slowly her condition began to improve. At best, the hospital stays became more infrequent. At one point in time she had gone 18 months without a hospital stay. The trips to CF clinic where every other month which is the typical visit schedule to the team of specialists. Best of all, the home treatment program became more routine and less strenuous. Hannah was able to enjoy many activities and play dates! It was a treasured blessing that she had reached a point where she could be a child opposed to a patient even though she still had to adhere to a strict treatment and medication regiment.
Sadly, over the past twelve months Hannah’s condition has significantly declined. Our hearts were heavy and the tears were countless as our ears listened to the words that we dreaded to hear. Hannah was not going to get better despite the intravenous medications, the treatments or the latest program. Her shortness of breath, frequent illnesses and numerous hospital admissions was her new best. Her lower left lung has failed to function properly and the upper half has sustained profound scar tissue damage, of which neither condition will recover. In addition to a series of breathing treatments four times a day, therapy vest treatments 3 times per day and numerous inhalers/medications, Hannah will now adjust to utilizing oxygen through the night and as needed during the day. Hannah is no longer able to participate in her beloved dance classes or other activities due to her medical decline. Enjoying a simple pleasure such as sleeping over at a friend's house is no longer an option. For that matter, at this time friend’s that visit Hannah must wear a mask to protect her from any potential illness.
In the last 5 months Hannah has been in the hospital on 3 occasions for a minimum of 8 days. Prior to that, Hannah had been in the hospital twice for pneumonia and CF infections. In the last 12 months Hannah has been hospitalized more frequently than an average Cystic Fibrosis patient would be scheduled CF Clinic. She was moved from the pediatric ward to the Pediatric Intensive Care Unit for several days due to the devastating effects of sepsis. This current illness has left Hannah so weak that she is learning to use a walker and enduring physical therapy.
Although a lung transplant may be an option in the future, Hannah must endure the harsh realities of her disease for now. Her lungs function in the 40% range and organ failure is required for a transplant. I stay home with Hannah and two of her siblings as she and her youngest brother (and last adoption) require 24 hour care. Caring for a child with Cystic Fibrosis and one with multiple defects is emotionally troublesome and financially devastating. Families, in the middle class with married parents, do not qualify for the majority of government and/or private assistance programs. It is enough of a battle for a child to struggle with a life threatening disease and for a family to wrestle with the heartache of watching a child suffer. It seems cruel that a household must also contend with the financial hardship as a result of fighting for a child’s life.
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