My apologies for not updating until now! My good intentions were consistently challenged and ultimately time slipped away. I hope this update finds you well! We appreciate each of you coming alongside us. I pray you find this update hopeful and gives you a window into how to come alongside us in continued prayer.

God is good! Amidst the hurdles, He has provided, comforted, and continues to give us hope.

God provided…

A Driver license for Michael! And well-being to enjoy his independence.

·         While at Disney with Casey’s family. The many logistics were beautifully coordinated which allowed us opportunities to visit with much laughter and joy! Thank you again to my sister-in-law, Marissa Lajaunie, who helped keep us straight. I was able to meet up with Fernanda, my sister in Christ and former exchange student from Brazil. It was an unforgettable experience!

·         Two summer jobs for Michael and the adventure of scrapping metal for pay. Michael was blessed to work at Papa Murphy’s, which was a family-owned pizza shop, before they closed their doors two weeks ago. He’s also had the privilege of working at Trader Joe’s since June. His side scrapping metal job was bolstered by a family friend at Aristoi who admired Michael’s entrepreneur spirit and work ethic. Thank you to the Robinson Family for providing an opportunity for him to jumpstart his business!

·         Housing in Austin when our family attend a Family Weekend Retreat for families who have a deaf/Hard of Hearing child. We met wonderful families at the retreat and Michael connected with peers walking through similar struggles. Thank you to The Phillips family for letting us stay in your lovely home! It was a safe, welcoming space to process through this new chapter of our lives.

·         A scholarship for Michael to attend a NASA Space University Camp. It took a bit of work on my part, but the Texas Workforce Commission finally pulled through paying for the cost of the week-long camp. This was the main thing Michael wanted to do this summer as he has an interest in engineering, so this was a win!

·         A scholarship for me to attend a Statewide Deaf/Hard of Hearing conference in Corpus Christi, Texas. This one was for Parents and Educators and tackled issues specific to the challenges Deaf/Hard of Hearing students face in their learning environment, education, and mental health. ***One big take away is needing to find an adult mentor who is deaf/hard of hearing yet using amplification devices (hearing aids or cochlear implants) while navigating the professional world. Michael does not sign as his primary language. He currently uses hearing aids and lip reading. I realize this is a lot to prayerfully ask – but we serve a BIG God!

·         A week in Marble Falls, Texas – The Texas Hill Country. It was a sweet time for our family and served as our summer family get-away! We were gifted this week away as a married couple and family by a longtime family friend (you know who you are!❤️).  We owe them a huge debt of gratitude!! Their family blessed ours tremendously with deeper connections within our family, meanwhile experiencing the beauty of God’s creation which reminded us how truly BIG He is. We took simple day trips to State Parks with picnic lunches, did some hiking, and swam in swimming holes – it was such a perfect fit for our family! Both their ages and mobility. We had plenty of rest too!

·         A Mitchell Syndrome community of parents and medical teams that are fighting for our boy and other patients!! Michele Herndon, who is Mitchell’s mom and VP of Mitchell and Friends Foundation, traveled to two conferences this summer spreading the word and  talking to medical professionals and pharmaceutical companies about Mitchell Syndrome. Her work is opening doors and speeding up potential treatments for all patients! Her husband, Matt, faithfully updates their Foundation web site which is an excellent source of information for both families, medical professionals, and those considering financially supporting current research efforts.

Our BIG news is there is a potential Gene Therapy that may help Michael! While NAC cleans up the garbage (excess Reactive Oxygen Species his ACOX1 Gene creates) the ASO form of Gene Therapy could potentially help the garbage be produced at a normal amount, so not produced in overabundance. ASO Gene Therapy has shown promise in other “gain of function” genetic mutations like Mitchell Syndrome. This “gene” would have to be designed in a lab, and it would sort of cover up the bad gene mutation in Michael’s body. The good news about Mitchell Syndrome is it is only one gene that is impacted vs. diseases that impact several genes.

Fundraising -

Texas Children’s Hospital is paying for Michael and I to fly to St. Louis in September to visit with Dr. Bucelli, who is a Neurologist and Researcher leading this work, to be evaluated and learn more. We know Michael will have a skin biopsy while there and that the skin may be used for research. While we are there, we will attend a Mitchell Syndrome Trivia Fundraiser hosted by The Mitchell Syndrome Foundation, headed up by Mitchell’s parents, Matt and Michele Herndon. We are working through other details of who from our family will attend as expenses are tight. To donate to support Lajaunie travel that weekend (hotel, rental car, parking, meals) you can use Michael’s GoFundMe page. To contribute towards research and Mitchell Syndrome in general, click here. Our priority is raising money for Mitchell Syndrome Families and Research efforts. Please do only as the Lord leads!

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As for Michael medically, in March 2022, he experienced another decline in hearing after an episode of fatigue and nausea. To stabilize him we ended up in the hospital for a brief stay where they administered high doses of liquid NAC and fluid. Thankfully, he bounced back from being under the weather.

Hearing - Michael will again explore the option of larger, more powerful hearing aids next week. His tinnitus has gotten louder since March and his current hearing aids are maxed out, as loud as they will go, which is not loud enough making clarity of communication difficult both at home and work. We are prayerful he will be set with new hearing aids by the start of school in two weeks.

Eyes – Michael has had contact band aids on his corneas for a few weeks. His corneas were irritated again, and it was debilitating. The contacts are the only thing seaming to provide full relief to his corneas. Steroids and other chronic drops for dry eyes weren’t doing the trick. He has been on steroids and is hopeful to soon try again taking off the contacts and seeing if his corneas have healed enough where he can proceed without them.

Legs/Feet - This week Michael will begin Physical Therapy to address progressive weak ankles and slight decreases in balance.  His Peripheral Neuropathy has also increased to his knees. He’ll do PT once a week for the next four months.

Update on the trial drug NACA - We had a check up with Michael’s Neurological team and Geneticist in July. They were the ones who confirmed the news of Gene Therapy happenings and also updated us about the trial drug, NACA. We are still waiting to hear if the clinical trial in Australia was safe, and if so maybe we can piggy back on that data.

Family news:

·         Our girls grew closer to the Lord and our church community through church KAMPs, mission trips, and serving at Vacation Bible School (VBS) over the summer. Each time we reconnected, their personal relationship with the Lord Jesus Christ was more real and tangible to them both. They have also enjoyed meeting up with friends from school for various athletic endeavors offered through Aristoi Classical this summer. We are grateful for our precious community both at church and their school!

·         Michael is transferring to Cinco Ranch High School this year, his Junior year. I’ve been in contact with their Student Support Services at Cinco and all accommodations are in place, his schedule is set, and the sport he selected, Cross Country, starts tomorrow. He is transitioning to taking a lead role with his medication since this will be necessary as he transitions to adulthood. It is a work in progress. Prayers a healthy routine is established and in place prior to the start of school.

·         Casey is still enjoying his job. He’s been helping the Aristoi Cross Country team and keeping our house afloat! Truly. He is the glue. I am beyond grateful for the stability and safety he provides!

·         I am applying to work at the girls’ school and asking the Lord to open doors if it is His will. We are being stretched financially - as are many families right now. I’m concerned how I will balance it all, yet also trusting God will be with me if it is His will for my life. Meanwhile, I’ll do my best to continue to steward our finances well and utilize resources available to Michael.

To God be the Glory for the good in our days! May he continue to strengthen us on the hard days and guide us to continue to move forward. He is a Good Shepherd!

By God’s grace,

Mary Lajaunie