Born January 26, 2004, Haven Kristina entered the world weighing in at 7 lbs 7 oz and 21 inches long. She was a happy baby and rarely cried, which was nice considering new moms and dads never get to sleep much.

Haven developed early and was using sign language by 6 months old and walking by 8 months old. Everything was going as planned until about age 2. We started noticing slight changes in her personality, and by June 2006, Haven had definitely changed to a moody child with OCD.

While living in California, in July 2006, we took her in to the doctor as she had gained 25 lbs in one month. We did a lot of blood work and an MRI of the brain to find nothing. By October 2006, she had gained another 15 lbs. We had another MRI done and more blood work – still nothing.

In January 2007, Haven was back at the doctor with extreme pains in her stomach and blood in her stool. Still, the doctors did an MRI of the brain and said she was just overweight. She was put on a 1000 calorie diet at age 3. In June 2007, Haven’s left eye turned out to the left. We took her back in for another MRI. This proved too much for Haven and she went into a seizure before I had even left her side, and stopped breathing. Placed on a ventilator, she was in the hospital for a week.

Almost 1½ years had gone by, and Haven was getting worse with nothing being diagnosed, so we moved our family to Maryland to get in to Johns Hopkins. We were here about a month, when in October 2007, we were calling 911 with Haven having another seizure, but this one lasted 45 minutes long. She was rushed to Johns Hopkins where she stayed at the hospital another 10 days with numerous departments checking her and testing her, ultimately putting us in the care of Endocrinology. Haven was placed on blood pressure medication due to her constant high blood pressure. Another month of constant testing for Cushing’s Syndrome her Endocrinologist called us on December 28th, 2007, informing us that Haven would now be handed over to Pediatric Oncology as she has Ganglioneuroblastoma Cancer.

Shocked and overwhelmed, we began meeting with Oncology weekly about the tumor and the cancer. Her tumor was in the abdomen at the back, near the spine. But the strange shape of it was concerning to them. It was wrapping around her main blood vessels. We scheduled her surgery after her 4th birthday so she could have a little fun. We waited anxiously in the waiting room for 14 hours when we finally got to see her. Another 10 days in the hospital for recovery and we were home and planning the start of her chemotherapy treatments and at home medications.

She had been on chemo for 9 months and had a scheduled 4 months to go, when we went to our next follow up visit with Endocrinology in November 2008. Haven was officially diagnosed with ROHHAD (Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation).

We were told that with Haven’s calendar of progression, they expect that she will stop breathing on her own between the age of 6 and 7. In disbelief, I refused to accept that, and started researching and contacting doctors all over the USA. After 3 weeks of being told, and seeing all her charts and comparisons and blood levels and everything they can show, I can do nothing but agree.

Currently Haven is still in the middle of treatment for the cancer and tumor while we await more testing and confirmation from the medical board. This is such an extremely rare disease and to date there are only 30 known cases. We will be traveling to Chicago to visit a doctor who has worked with 15 of the 30 ROHHAD children.

As Haven has only reached the half way point of ROHHAD, we know that the years ahead will be difficult and trying, but more than worth the fight. We have an idea of what to expect in the coming years, as 75% of ROHHAD children go into cardiac arrest between ages 6 and 8. We also know all ROHHAD children lose the ability to breathe on their own between 5 and 8, and will then need machines to breathe for them.

Haven is our angel and she keeps us fighting for the cause of all the children of the world. She is strong and she is a fighter. She is truly an inspiration and I couldn’t imagine a day without my baby.

Click HERE for recent MACS updates on Haven
(these Updates are a Summary of the past 3 months)