What the HHT?

A Voice for the HHT Community

HHT – A Team Sport

Leave a comment

By Desiree Clark

Alex BasketballIf you’re a “sports” parent, you understand the anticipation of getting your child to varsity year. Many of us pick up second jobs to pay the fees for city recreation league, school league, church league and all the other ways we can “league” our kids to first string. I’m not a pushy parent, but definitely wanted to support my son in his basketball endeavors. So, whatever would help him become successful and happy was what I wanted to do.

Al was blessed with the gift of height, which drew the attention of many a coach looking for their dream team. It wasn’t long before he was traveling all over the Midwest. I’m not sure my son loved the game, but he certainly loved being a part of a team. The boys were like brothers to him. He listened to the coaches and followed the play charts to a tee.

We moved to another state his sophomore year, and due to high school sport rules he had to wait a year to play. Being far from home was challenging and he was getting migraine headaches and nosebleeds more frequently. We chalked it up to stress and a different barometric pressure index. Until, finally, senior year was here.

It was Thanksgiving weekend and my heart was pounding as the announcer called out the starting players names of his first varsity game. The crowd went crazy as the 6-foot-6-inch center ran on to the court. Two minutes hadn’t even gone by when there, from center court, came the ball from the hands of my senior player. It arched just right and swoooosh!

I couldn’t tell you if they won the game, but the memory of that basket is what I cherish. It came from a boy that, despite a myriad of challenges – dyslexia, partial blindness and SPD – was selfless, patient and supportive of his teammates. To me, that two points on the scoreboard reflected a lifetime of determination.

That was Al’s first and last game.

Alex Basketball 2

Al and Desiree in the ER.

Chest pains prompted us to the emergency room. Al had pulmonary embolisms. It was discovered he had a combination of several rare genetic diseases. Tests revealed he had Lupus Anticoagulant, a blood clotting disorder, along with a genetic disease called Factor IV Leiden, another blood clotting disorder.

Then we heard the acronym HHT for the first time. His was in a delicate situation as the clotting diseases require blood thinners as treatment, but are dangerous for HHT patients. Doctors weren’t sure what to do as there was only one previously documented case like this. Al is a medical anomaly.

A new game has begun for my son. His team consists of a Hematologist, Otolaryngologist, Pulmonologist, Interventional Radiologist, Neurologist and a Family Practice Physician. A new play is also on the charts, but Al isn’t as eager to follow it as those he used to study on the locker room whiteboard.

He will need to trust a new coach – one who guided us to move to a city with an HHT Center of Excellence before we ever knew we needed one. A coach whose unique play led us to a hospital in which all the right specialists “just happened” to be on rounds the week Alex was admitted, resulting in a quick and accurate diagnosis. A coach that will guide us to a cure once and for all. I’m hoping you’ll join our team.

There are no tryouts, but you will need determination, patience and a willingness to bring awareness to this cause. We need a three pointer on this one, friends. SWOOOSH!!!!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s