What's It Like Being a Parent
Of A Sickle Cell Patient

Sickle Disease Living with Sickle Disease
Parents with sickle disease patients hemophilia

By Kim Holland
Meet Comille

Hello my name is Kim Holland and most of you know me as Comille's mom.

Comille was born with a form of sickle cell disease called Sickle Beta Zero
Thallasemia. When Comille was first diagnosed with this disease I didn't know anything about it. I had heard about sickle cell but never knew it was as serious as it is. I paid no attention to the name and did as the doctor said and on a daily basis I gave Comille penicillin.

The first real crisis I saw was when he was 6 months old. He was just so very swollen in his hands and it just looked painful. He had a very high temp. and so I called the doctor and he immediately admitted him into the hospital.That was the first of many hospital stays he would have to endure.

I decided I would try and learn all I can about this disease because I didn't want any more surprises. Then one day Comille's doctor approached me while during one of Comille's many hospital stays and told me my son was not going to live pass the age of 2 and there was nothing they could do about it. My biggest chance of saving his life was to bring him to Miller Children's Hospital which is located in Long Beach California. I was scared to death for a long time but I had no choice and the most important thing was to save my son's life. I packed up everything and was on my way to a new life.

The first doctor we saw was Doctor Moret.She was very kind to us and gave us the name of a great hematologist by the name of Dr. Groncy.She also gave us the name of Dr. Teddi Softley.Between the two of them they helped me to keep my sanity. I was scared but felt safe with them. They gave me a sense of security because they didn't just treat my son as another statistic they treated him with care. I could see Doctor Groncy and Dr. Softley really cared about what they did and that I appreciated.

Comille was first given only 2 years to live if that long but with the help of some great doctors and the wonderful will to live he has now made it to age 11.

It was painful at first to see my son go through the ordeal he was going through but now instead of so much pain Comille and I have learned to deal with what we are going through together as well as with the help of wonderful doctors, nurses, and other family members who have similar circumstances. I am very grateful to all those who are involved in my son's life and his battle with sickle cell disease. I no longer have that scared feeling, I now have a feeling of hope.