08/12/2017
Even though this page has been active for many years, for a variety of reasons, I have not been as active as I would like to be here. Because many things have changed of late, this will now change. This page is not for me. It is for the countless families who have endured ALD. For each and every supporter who has allowed what they have
Losing a child. Simply put, there is nothing worse. Losing a child to ALD is in many ways worse. Not being able to do anything as your son loses hesring, vision, and speech, is crippling. Both physically and emotionally. This process does things to families i canot readly describe here. A life wthout hope really is not life.
There are certain encouraging treatments now being tested which will spare boys from the terrors of ALD. For that, I am gratful. At the same time, I am well aware that this will not be enough. High risk boys will continue to face uncertainty. I have plans to address this. The thing is, I do need support. While i culd throw a party to raise needed funds, to be honest, there is nothing to celebrate. I am open to your comments and suggestions and thank you in advance for offering this. Next week, I will post specifics of what I believe must be addressed. Until then, thanks to you all. Have a great weekend
