Beliefnet
For the rest of my life, this time of year in the Islamic calendar will always be dear to me. This is the Hajj season, and Muslim pilgrims from all over the world are already descending upon the holy cities of Mecca and Medina to perform the annual Hajj ritual. Many, if not most, of them are going for the first time, and I can feel their giddy excitement right here from my computer in Chicago.

My father-in-law gets Saudi Arabian television, which broadcasts live images of the daily prayers in Mecca. Whenever the prayer is broadcast, I smile, and my heart aches and yearns to go back to Mecca. These words do not do justice to how much I truly miss the holy cities of Mecca and Medina.

The Hajj was the most powerful and emotional spiritual experience I have ever had. The city of Mecca exuded with the Power of God, which humbled me completely. The prayers I performed in front of the Ka'aba, the holy shrine in Mecca, were unlike any others I have ever performed. After getting our fill of worship at the Holy Shrine in Mecca, the trip to Medina was like the most delicious dessert following a most satisfying meal.

To go and finally meet the Prophet, worship in his mosque, feel his cool, soothing presence all around you, was completely intoxicating. Tears still come to my eyes when I think back of the first time I met and greeted the Prophet in his grave. God willing, I intend to go back one day, and I pray that day comes soon.

Looking back a year later, however, I am sad to report that many of the effects of the Hajj have since worn off. Once I came back, the harsh and difficult world of everyday life came at me with full force. It was if life was itching to hit back, angry that I left it for three weeks to fulfill the fifth pillar of my faith. I once again get angry in rush hour traffic; I once again miss some of the extra rituals of worship; I once again do not read the Qur'an every single day. It makes me sad to admit this fact, but I hope that writing it down will help encourage me to work and rekindle the spirit and special feeling of the Hajj that so touched my heart and soul one year ago.

There is one thing, however, for which the Hajj was indispensible: my daughter. My oldest daughter is seven years old now, and ever since she was a young child, we always knew her to be a bit clumsy. It was cute at first, but the clumsiness did not go away with time. As she grew older, her walking was never normal, but I always attributed it to her clumsiness. In addition, she seemed to get more infections than most children her age. Then one day, several months before we went on the Hajj, we asked our daughter to walk on a straight line, something any soon-to-be six year old should do. My daughter could not for the life of her. This was very abnormal and alarming. Being a physician, I knew what that meant: she had a condition known as ataxia, or an inability to balance oneself. In a child her age, ataxia frequently meant a tumor in the part of the brain that governs balance, the cerebellum.

We saw a pediatric neurologist, and he was very concerned about her physical problems. He ordered an MRI of her brain, and it was normal, thank God. He told us that if the MRI was normal, it was probably something she had since birth, and she will learn to adapt with time. We were very relieved, and this is what actually sparked the idea to perform Hajj that year in thanks to God.

Our daughter, however, only got worse. During the Hajj, she was hospitalized for pneumonia (unbeknownst to us), and when we came back my family told us what happened. We were still uneasy about the fact that she still was wobbly on her feet, and so we sought out another pediatric neurologist for a second opinion. She said pretty much the same thing as the first, but she ordered some extra blood tests just to make sure nothing else was going on.

On a Friday afternoon in February of last year, I checked my daughter's lab results in the Doctors' lounge in the hospital. Everything was normal...except for one test. The number was off the chart, and this could only mean one thing: my daughter had a disease called Ataxia-Telangiectasia. We got another more definitive test which confirmed the diagnosis.

Ataxia-Telangiectasia, or AT, is a horrifc genetic disorder characterized by progressively worsening balance difficulty and chronic and repeated ear and sinus infections. In order to get the disease, our child has to have two AT genes. My wife and I both have the gene for AT, and unfortunately, we each passed our genes to our daughter. Her balance problems will steadily get worse, and eventually she will be wheelchair-bound. In addition, children with this disorder are continually plagued with infections as the immune system is rendered weak by this disease. Our daughter has already had sinus surgery and tubes placed in her ears in order to deal with the numerous infections. In fact, infection is frequently what kills these children, and every day I deal with the very real possibility that I will one day bury my little one.

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