Our story

  Our story really begins with our daughter, Grace. 

 She was born with multicystic kidney disease, which left her with only one left kidney.  We learned this when I was pregnant with Grace and until she was born  we did not know if it would go to the other kidney and whether she would survive. 

 She arrived and looked perfect.  Her cysts eventually disappeared and she was put on prophylactic antibiotics.  Soon after we stopped the antibiotics, she became ill with Strep throat at the age of 7 months. 

 This infection went on, along with thrush and mouth sores.  She dropped in weight from 95% to 5%.  The doctors were unsure of why she was unable to kick the infections.  With immunzations she became even more ill.  Finally Rafampin was prescribed and after losing much of her body weight she kicked that infection. It was just a week later and another infection was back, this just keep repeating. By the time she was one, she had CMV, Epstien-Barr and Parovirus B-19. Her teeth came in with little to no enamel. She also had surgery for a cyst on her eye. 

 We were scared and frustrated.  At this point all she was able to take in was my breast milk.  We finally took her to our original doctor that had been added back to our insurance.  She noticed right away that Grace was severly anemic, but since her nutritional status was poor we had thought that was the reason.  She also found that Grace was neutropenic.  This was a word we knew little about. 

 Chris and I were both trained in health care but still we were not doctors.  We were sent to the Children's hospital and a bone marrow biopsy was done.  We were told she may have leukemia or cancer.  We waited all night until the report came back.  She thankfully did not have cancer but clearly her bone marrow was not normal. She had severe neutropenia and anemia. 

 She was to be isolated from any large crowds.  After months of waiting to find out what she had, we decided to take her to Mayo Clinic.  Looking back, this was not the place to take her but at the time, it's all we knew. Tests were run and the first of many misdiagnosis were made.

  We were told that she had Autoimmune Neutropenia,  a neutropenia that she might outgrow, although she did not fit the disease and was more severe, we were given treatment of Intravenous Immunuoglobulins(IVIG).  She did not respond to this at the time.

  I had been researching and learned of the Severe Chronic Neutropenia Registry and contacted them.  Grace was accepted since she was severe( meaning her neutrophil count was under 500) She started GCSF injections every day and after a while she started to do better.  She still got sick but not as bad or as often.  These shots were around $300.00 per day and since she was in the study, we received them free.  

 She suffered from extreme bone pain and I often sat up nights.  She was diagnosed with osteoperosis and osteopenia .  We were assured this was not genetic and that if we had another baby we could save the stem cells from the umbilical cord in case Grace ever needed them. This in no way is the same as embryonic stem cells.  Chris and I do not support taking one life for another.   We believe our children's lives are also worthy of value.  God loves life and all efforts should be made to save it, no matter the cost!

  So five years later our Samuel was born.  Right from birth he was neutropenic.  This changed everything, it meant this was a congenitial (genetic) form of neutropenia.  From my research I knew my kids could die.

  We were devastated.  I think it took months for it to really set in.  Samuels counts ranged from 200-1100.  He had less illness but when he got sick it was big sick.  He had sepsis, staph infection, and a massive lymph node infection that he's still fighting today. He also has the lowest cellularity along with hemolytic anemia and t-cell abnormalities. He too suffers with mouth sores, thrush and dental cavities.  Bone marrow and blood draws, doctors, hospital, illness and bills became a major part of our life. 

 He too was put on daily shots and we no longer get these free of charge.  We were struggling and finally hit rock bottom. 

 Deep in my heart I knew our oldest had it too.  He was diagnosed failure to thrive and I just could not bear to accept that he to had the same fate.  We had asked doctor's if he might have it too, but they said no way.  It wasn't for another three years until he was tested and found to have mild neutropenia.

Jake has more G.I. problems than the other two.  He has inflamation of the small intestine, eosinoplhils in the gut and many bacterial infections in the stomach.  He also has GERD which effects his stomach and his teeth.  He cycles from normal to his lowest anc count at 920.  He too has red blood cell problems and all three cell lines in his marrow are involved if they reach the blood, he too will need a transplant.  We pray since he is the mildest bone marrow wise, he will be o.k.

  Finally,  we began to seek other care in any place we thought might know about our kid's disease. We traveled everywhere and spent every penny to find out what our kid's have.   We found a wonderful doctor at Duke children's and we were told all three had a bone marrow failure disease and most likely each child may need a transplant. However, he said  Grace would need one very soon.  He since has done more testing and shares that Jake will just need to be watched more closely but as for now, feels he may not need a transplant, for this we are truly grateful and know that since the first horrable visit, God is working to help our doctor to better understand our children.  We are praying for him and his staff daily.   We know this disease is difficult and sometimes things will be wrong.  This wrong is a good one and we pray it stays that way!

 Chris and I have known each other since kindergarden.  We were high school sweethearts and had many hopes and dreams. 

 We would not have realized, we are living our dream each day we hear our three children's sweet voices had it not been for God leading us to our church home and growing us in our relationship with Jesus.

  We depend on him daily to keep us going and full of hope.  Prayer of others for our family, we know is helping us to keep upbeat.  We have learned that our dreams and hopes of material things is so insignificant but want to be able to take care of them and enjoy our time with them making memories.  

 We realize eternity is where our desires should be and we believe our children will be healed!  We continue to depend on daily prayer and leaning on His Word.  We are still unsure if we will go through the transplant and continue to seek His guidence.  At this point we are preparing with tests and hoping for a miracle.