JoeyLynn Nolan

I am JoeyLynn Nolan, Mom of Angel baby Joey Nolan.

Joey is our second son, after Big Sister Lola, Big Brother Eddie, and before last little brother, Noah.

Joey was born healthy, but he quickly showed us that something was out of of the norm. He was admitted to the NICU days after birth for trouble breathing, low body temperature, and he was listless.

He came out of the NICU after 10 days, and he did well for a few weeks, but something still felt "off" to me. Within a few weeks, he began to have abnormal movements in his hands, feet, and face, and eventually full blown seizures.

The seizures became uncontrollable, and we were in and out of the hospital quite often. Because Joey was displaying severe drug resistant Epilepsy and poor development, his testing was expedited, and revealed a change in his Tbc1d24 gene.

We all have about 20,000 genes, and both Ed and myself were unknown carriers for a mutated Tbc1d24 Gene. Joey was unlucky and received both of those mutated copies which results in the Tbc1d24 Disorder.

Unfortunately, Joey was on the very severe end of the Tbc1d24 spectrum, and all of the medications that we tried eventually lost effectiveness, and we felt that Joey was very much suffering.

Joey passed away in my arms on November 21, 2019 in a very peaceful and loving embrace.

Joey is our why.

The deep love we carry for him, the never ending pain of losing and missing him, and the unfair prognosis that this Disorder delivers, will forever drive us to try and change the future landscape of this diagnosis for future affected children.

We are making a difference. Please join us in Joey's name.

Love,

The Nolan Family

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