PO Box 774
Louisburg, NC 27549

Dear JHC,

  Our daughter, Claire, was born in a small town hospital in Michigan. She was born blue, not breathing, and was so tiny. The doctors worked on her for about an hour before they could get her to breath on her own and we couldn’t do more than hold her hand for the first 24 hours. They didn’t know why, they couldn’t tell us what had happened. When we could finally hold her in our arms, when we looked at her gorgeous face, we knew at that moment that Claire was a gift from God and we started calling her our “little angel”. Claire spent her first 3 ½ yrs constantly sick and was hospitalized numerous times with pneumonia, bronchitis, ect. By the time she was 3 yrs old, she had been diagnosed as having Failure to Thrive, Chronic Bronchitis, Chronic Bronchialitis, Chronic Pneumonia, and she went through every hospital and doctor that we could find in our area. A friend told us that some of the best Pediatric Research Hospitals were in NC, if anyone could find an answer then it would be here in NC and that we should at least check it out. For that reason, among a few others, we moved to NC. We were desperate to find a reason for her constant illnesses. After visiting NC, and researching the area, we moved to NC a few weeks later.

  Claire was hospitalized in Raleigh shortly after moving here for Pneumonia and we were referred to a specialist for follow up treatment and testing. We took Claire in for testing with the hope that we would find an answer for her constant illnesses and that it could be solved with a dietary change or a simple pill. That is when we first heard about Cystic Fibrosis, it was the first time we had ever heard of the disease and it was not the answer we were hoping for. We were devastated to learn that she has an incurable terminal disease. We were completely unprepared for the emotional, physical, and financial aspect of caring for a child with CF. We choked back the pain, heartache, and sorrow we felt and tried to learn as much as we could about CF.

  Claire is a fighter, she is a gift to the world, a blessing, from God to us and she is the most incredible, beautiful, intelligent, stubborn, bravest, and strongest little girl we have ever had the honor to meet. We are very thankful to have her in our lives and we are blessed every moment we can share with her. She wants to be an artist when she grows up and she loves to draw, paint, and color. She has a Hello Kitty pink room that she designed and we made her design a reality. We have done our very best to give her everything she could ever need or want and to make her life as wonderful as possible. She has tried her best to be like any other little girl but she knows she has limitations and she knows a little bit about her condition. We have not, can not, tell her yet about the severity, what it really means as far as her future goes because she is still so young and she is not ready, we are not ready. We still have to have hope for a cure, hope for a miracle, it is that hope that keeps us all going every day. We have had two boys since Claire was diagnosed and both of them have CF. Their conditions are not as severe as Claire’s, but they have had multiple infections and are showing increased CF damage.

  Claire has had multiple serious infections such as Pseudomonas, Xanthomonus, Stenotrophomonas Maltophilia, and Alcaligenes. Her condition is serious, her organs damaged, and the stage of the disease is now severe. On 10/13/05, after having a cold/flu virus spread throughout our household of 7 people for a week or so, we had to make the call that every parent dreads, we called her CF Specialist and begged for hospitalization for her because her fingers and toes started turning blue and she was not breathing right. We rushed her into UNC - CH Hospital that morning and our nightmares turned into reality. Shortly after arriving at the hospital and being put on 100% Oxygen she stopped breathing, she went from sitting up and crying to go home to turning ashen gray, falling back on the bed and her heart rate raced to 300 bpm, her respiration dropped to 0, and then nothing within a minute. If it were not for the quick, coordinated, and efficient team of Doctors, Specialists, and Nurses working on her, we would have lost her. We have never been so terrified in our lives as we have been these last few weeks. We were told that it is very rare for a CF patient to come off of the life support machines but we have never prayed so hard and we never gave up hope. We knew in our hearts that Claire is a gift from God and He is not ready for her to go home yet, we will never be ready, and we will do whatever it takes to keep her here with us. She was taken off of life support and she is able to breathe on her own with the help of Oxygen equipment days later. She beat the odds again, just as she has so many times. It was touch and go in PICCU, no one telling us if she was going to make it or not. She was finally moved to a special children’s floor a couple of weeks later. She is on Oxygen and the Doctors say they do not know how permanent or severe her lung damage is going to be. She is on several antibiotics to kill the infection in her lungs. It is the scariest roller coaster ride now, not knowing what is going to happen, her condition constantly changing from bad to good and back and forth, and never knowing what is coming at us around the next turn. We have been told that when Claire does finally come home then we will need a Pulse Oximeter because she has to be monitored whenever she is sleeping and spot checked throughout the day and that more than likely she will have to stay on Oxygen.

  The hospital has already started asking how we are going to pay for it all. This one hospital stay will total well over $150,000.00, which is money we don’t have but that the hospital wants paid immediately. We have always worked hard in our little business to provide everything we can and pay for everything needed. We have been told too many times over the years by government programs that the only solution was to give up everything we had worked for, or to divorce and separate our family, just to qualify for medical coverage. We have fought to keep the little that we have, to continue to provide for our family, to keep us together. Now though, we don’t know what to do. We don’t qualify for standard programs like Medicaid and we can’t afford regular insurance. We have applied for everything we can find. The CF Services Pharmacy/CF Foundation was kind enough to give us the needed medications for the children with CF. Now we are having to find a way to pay for the medical equipment needed, a home health care nurse, on top of the hospitalization bills and regular medical treatment bills while also dealing with Claire’s condition worsening. Dealing with all of this, the condition of Claire and our two sons, the medical, emotional and financial worries and fears, all of it made us feel completely alone and secluded.

  Few people could understand why we don’t go to church or any other public functions for fear that the children would contract a virus that could seriously hurt them or why we keep to ourselves so much. Few people could understand that with 3 CF kids on treatments and meds every few hours then we just don’t have the availability to leave the house for more than a couple of hours at a time. We didn’t know where to turn or what to do. Then we talked to Mr. Mahoney at Jesica’s Hope Chest. He understood how we felt, what we had been through, what we are going through now, and he helped us to feel not quite so alone in this. He gave us a little bit of hope that there may be an answer to our situation that could help at least a little bit. For that understanding alone, we are in his debt, just to hear someone say to us that we aren’t alone and that they care and will try to help, to have someone listen to us cry and blabber on, means more than we can say. Thank you for being there Mr. Mahoney and Jesica’s Hope Chest, thank you for listening and caring and helping us and others like us.

Sincerely yours,
Brian and Kimberly
Ryan, Caytlin, Claire, Alexander, and Patrick

See Slide Show   Español   Donations   Applications & Forms   "Hot News"   Story Behind The Chest   Our Mission   Jesica's House   Board of Directors   Letter from the President   Contact Us   Frequently Asked Questions   Picture Gallery   Special Thanks   Other sites to visit   GREEN RIBBON