2003 Letter

Try to be the parent you know she deserves.  That’s what I saw above me on a community service bulletin recently on the subway.  To me, it really summed up everything about parenting.  Try to be the parent you know she deserves.  It’s all about what they deserve.  Children deserve to have a roof over their heads, they deserve to never go hungry and they deserve to grow up in a loving environment.  But they also deserve to be healthy and safe.

Deirdre was diagnosed with cystic fibrosis (“CF”) two weeks after birth: those are the cards that were dealt to her and we cannot question the how or why.  What we can do as parents is create an environment that keeps her healthy while allowing her to grow up as normal as possible.

CF is the most common inherited disease leading to death among white people in the United States and 30,000 people in the US have it. CF is a disorder of the cells that line the lungs, small intestines, sweat glands and pancreas. Sticky, thick mucus contributes to the destruction of lung tissue and impedes gas exchange in the lungs. It also prevents nutrient absorption in the small intestines, and blocks pancreatic ducts from releasing digestive enzymes.  Deirdre, and others with CF, follow a strict regimen for the treatment of this disease including taking medications such as antibiotics to fight respiratory infections, enzymes to aid in food digestion (Deirdre takes over 26 pills a day), and vitamins to improve general health. At least once a day, Maureen and I perform chest physical therapy on her to dislodge mucus from her tiny lungs.

The severity of CF varies greatly from person to person regardless of age; the severity is determined largely by how much the lungs are affected. However, deterioration is inevitable, leading to debility and eventually death. Nonetheless, the outlook has improved steadily over the past 25 years, mainly because treatments can now postpone some of the changes that occur in the lungs. Half of the people with CF live longer than 30 years.

What shadows us each day is the stark reality that Deirdre will never be as healthy as she is today. CF patients are susceptible to more strains of bacteria than other people and have a hard time fighting these infections.  She’s tested negative for the Pseudomonas bacteria[1] of the lungs and will be tested every few months.  Once she tests positive she will be on a series of treatments that may lead to a lengthy stay in Children’s Hospital.  And with each one of these flare-ups or infections her little lungs will have diminished capacity making it more difficult for her to breath.

Deirdre celebrated her second birthday in January.  Although we’ve had two visits to the emergency room at Children’s Hospital and many doctor/specialist appointments in the last year, Deirdre is doing everything a two-year old should: walking, running, climbing(!), jumping and talking.  She loves to play with her sisters and cousins and especially enjoys going to the playground.  She is such a great little girl with an outgoing personality and always has a smile for everyone she meets regardless of her health. Leah and Tess simply adore her and take special care of her.

Maureen and I, along with her sisters, focus on what a wonderful girl Deirdre is and how to best maintain her health for as long as possible – we want to keep her healthy and pray for that day when a cure is soon found for this devastating disease. Try to be the parent you know she deserves.

Each year the Cystic Fibrosis Foundation sponsors what they call GREAT STRIDES: Taking Steps to Cure Cystic Fibrosis. As the CF Foundation’s largest national fund-raiser, GREAT STRIDES raises money to support innovative research, drug development and care programs dedicated to adding tomorrows every day to the lives of those with CF. Money raised from GREAT STRIDES will be quickly translated into exciting scientific advances that could have a profound impact on the face of CF.  More than 90¢ of every dollar raised is invested in research in finding a cure.

Never before in the history of the Foundation has there been more reason to feel optimistic. CF Foundation-supported scientists have made great strides toward identifying and understanding this complex genetic disease and it is up to us to make sure the momentum continues.

Those effected with this disease did not deserve it but we owe it to them to do all we can to ease their suffering and improve their quality of life and, if possible, extend their lives.  Maureen and I will not give up hope for Deirdre and believe in miracles.  We also believe in ourselves that we can be the parents that she deserves.

Maureen and I greatly appreciate your support and thank you for your time.

 

 

[1] The thick mucus in the lungs serves as a rich environment for Pseudomonas and over 80-90% of CF patients develop chronic Pseudomonas infections.