Against All Odds

When you think of the lottery and hear the odds are 1 in 5,000 and then your number is chosen, instantly you feel like you are sitting on top of the world. But what happens when the 1 in 5000 in your world becomes 4 out of 5 of your children diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT)....upon the mention of that news you don't exactly feel like a winner. Although with most diseases they say early detection is best, however this breaking news didn't seem to put us at ease as we prepared for preventative measures and a boat load of testing. Neurology, Cardiology, Hematology....... MRI's, Bubble Echo's and Bloodwork....with the age range of 4 years old to now 19 it has surely not been a walk in the park.

It is challenging trying to calm the nerves of my teenager as we prepare for yet another MRI while trying to help her accept something neither of us have any control over. Mentally preparing to have my 4 year old sedated to get routine testing done due to his age, was A LOT. While I am grateful their symptoms have not been severe (since the onset age is 50) I can't help but cringe with an overload of anxiety as I witness what both my husband and Mother In Law have gone thru thus far battling this disease. Nosebleeds, GI Bleeding, Low Iron and reduced quality of life is nothing you wish for when it comes to your children. You want them to have friends and play sports, take dance class and just live. But when playing sports turns into a nosebleed on the Basketball Court and now you are benched during the college exposure tournament game while to you wait for it to stop in a time frame that could last up to 30 minutes and a pack of tissues, but there's only eight minutes left in the quarter, how do you process that?

As an adult it's hard enough to accept what goes on with our bodies as menopause and other age related things ensue, however it seems different in a way because you anticipate their arrival to a degree...but this...not apart of the itinerary, yet you learn to go with the flow...literally. As we settle into our new norm we are still optimistic. We have an amazing medical team with the top specialists that treat us like royalty when we have our visits. It is so refreshing. Each year I attend the HHT Patient & Physician Conference to learn as much as I can to be able to care for my children and support them as they get older. With all of the advancements in technology and cutting edge research we are praying that a cure can be found soon so that our children can have less to worry about and more to live for.

If you are interested in learning more about HHT feel free to visit www.curehht.org