Leo’s Story

Site created on January 25, 2020

Leo Vincent Alpert joined us at 12:34pm on 1/21/20. We are so excited to welcome our vigorous cute little boy into our family.

His start in this world has had its challenges. He is one of 80 children born each year in the US with Treacher-Collins syndrome, a genetic syndrome affecting his cranio-facial development. We are creating this site to share updates with loved ones who want to support us and track his progress. We greatly appreciate your love and support. 

We appreciate your many generous offers to help. Right now we are very lucky to have family staying with us. If you'd like to donate a meal, the "Ways to Help" icon above has links to a mealtrain schedule. If you live far away and cannot cook for us, a donation to help us buy a delivered meal would be very much appreciated! We unfortunately expect our Leo to be in the hospital for weeks to months. Above, all, we appreciate your thoughts in the "well wishes" section.

Newest Update

Journal entry by Edgar Woznica

On Thursday, January 21st, Leo turned one year old.

And on that day, Alice and I have reached a major milestone with Leo, one in which we are less afraid that we will need to save his life from one minute to the next. 

Like many parents, we measured his first year in months, but we also celebrated each “monthday” as a special event because Leo continued to have close calls at home. As we shared previously, his trach tube plugged three days after he came home in March, and since then his trach tube has become dislodged a half dozen times. Fortunately, due to our and the nurses’ vigilance, his airway has been swiftly restored each time.

As Leo has grown he has also become stronger and more able to communicate to us when something is wrong. While we continue to maintain vigilance, we feel more comfortable in decreasing the constant surveillance and instead being more present with our baby boy.

We love to dance to his drumming. We love when he stands up and falls down on our bellies. And we particularly love to hear him sing his very own song now that he is tolerating the speaking valve. 

Now that he is a year old, we feel like we are going to have many more to share with this little guy.

Thank you for your love and support. We greatly appreciate it. It has meant a lot to us.

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