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Finding a Cure for Alternating Hemiplegia of Childhood

Meet Lainey. She was diagnosed with a rare and devastating genetic disease.

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Lainey’s Story

Lainey May Matuska was born on August 19th, 2018. She was beautiful and our hearts were full. She appeared perfectly healthy until the following day when she began to have what appeared to be seizures. 5 1/2 months and countless tests and hospital visits later, Lainey was diagnosed with Alternating Hemiplegia of Childhood.

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 Follow Lainey’s journey on Instagram @lifting_up_lainey

Now it’s Lainey’s turn! First day of preschool for big girl. Same gig as last year but she’ll be going 3 mornings/week instead of just 2. She (and we) are so ready for her to be back in school, surrounded by a wonderful team of spec
HAPPY BIRTHDAY LAINEY!! Our sweet girl is FOUR!!⁣ ⁣ Feels like we’ve lived a few lifetimes since this little rascal was born - she has kept us on our toes since day 1 and is showing no signs of stopping 🤗. ⁣ ⁣ Lainey’s past year has been
This past weekend Lainey got to meet a fellow AHC buddy in-person for the first time! Estella, her siblings, and parents Stephen and Lacey were driving through town and had the chance to stop and visit for a few hours. ⁣ ⁣ WOW, it’s like we&rsq
It’s Lainey’s last day of preschool for the year! Clearly she has grown but her ‘tude has remained the same. 😆 She had such a wonderful year with amazing teachers and so much love and support. Next year is sure to be even better wh
Well it has been a hot minute since the last Lainey update and a lot has changed in our world since then…the biggest being that Lainey became a big sister! Lainey’s new sister, Mabel Ross, was born on 2.22.22 and she is already 2 months
Today is Rare Disease Day - a day we never thought would be part of our lives but is now a day we ‘celebrate’ with over 300 million people worldwide who live with a rare disease. ⁣ ⁣ We don’t celebrate having a rare disease because
This is Henry. He was diagnosed with AHC at 9 weeks old. Henry's parents (Mary and Anthony) went through the same excruciating experience as Rob and I...witnessing terrifying and completely abnormal symptoms, searching for answers and finally getting
Today is International AHC Day, so an appropriate day to give an update on Lainey. ⁣ ⁣ The past month has been one of the most challenging and exhausting we've had to date. Since Dec 14th, Lainey has had 12 seizures. ⁣ ⁣ In the early hours of 12/14,
I’m on a podcast! ⁣ ⁣ ‘When Autumn Comes’ is incredible podcast hosted by Diane and Suz, two lovely medical mamas who have created a space for sharing an inside, real/raw peek at what it’s like caring for a child with medical
INCREDIBLE NEWS TO SHARE: My sister, Steph Benson, submitted and WON a nomination for the AHC Foundation to be one of three recipients of an annual fundraiser by her employer, United Health Group. The award included a professionally-produced film to
It’s Lainey’s first day of school! 😭😭😍 She is starting an Early Childhood Special Education program through our school district and will go to school 2 mornings per week. She gets VIP bus service, getting picked up and dropped off righ
She’s THREE! 🎉🎉🎉 We were so happy to be home to ring in another lap around the sun with our sweet Lainey May. Made it to the Saints game on a beautiful evening to celebrate and will continue to party all weekend long! ⁣ ⁣ Happy Birthday to o
IG snag, so a repost! 🤦🏼‍♀️ Long overdue update for Lainey. First things first, we are at Duke! Today we traveled down to Duke University for our annual appts with the top AHC docs at the multidisciplinary AHC Clinic. Lainey was an absolute dre
Seizure Control 101: it is HARD to get it right. Since Lainey’s bath seizure 4 weeks ago, we’ve tried the following to get the seizures under control:⁣⁣ ⁣⁣ 1. Increased her current medication. Saw terrible results with aggression and irri
 
 

There is hope for a cure.

The AAV Gene Therapy Project is the path to a cure for AHC

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