Help Michael Continue His Fight!

UPDATE: MARCH 24, 2025

I wanted to take a few minutes to update the wonderful supporters of our precious Michael as he heads into this next phase of his fight for survival!

As you all know, last year during this same time Michael underwent removal of the deficient rods in the left side of his chest which were replaced with appropriate hardware to expand the chest cavity. The surgery was successful, however has not had a tremendous impact on improving his circumstances.

So here we are today faced with a final and last attempt in hopes to extend and improve Michael's life by performing the same surgery on the opposite side of his chest. Several months ago Michael underwent a tracheostomy to help sustain him as he awaits this upcoming surgery and to alleviate some of the suffering from post surgery intubation.

Michael's ability to breathe continues to diminish and his physical activity is almost non existent, yet he remains in good spirits and tenaciously pushes through each and every day absorbing and taking every opportunity possible to continue to live a full life. You can still catch him at the library or sitting in the bleachers supporting Maddie at one of her basketball games or hanging with his best friend Bryce. He is continuing his online studies at George Fox University, even recognized on the deans list and maintains excellent grades. He is adamant that he continue to learn and grow every day, no matter what the future may bring! He is not quitting! His faith in God remains fervent and he knows his life is in the hands of our Heavenly Father!

Next Tuesday, April 1st, Michael is scheduled to undergo the last and final surgery of his life. This is a 10-12 hour surgery and we are in need of a miracle! Please continue to pray for the family, donate if you can, as financial hardship is inevitable at this time, and please ask your friends and family to also lift Michael and his family up in prayer through, yet again, another incredibly difficult time.

I will post updates during the surgery as time allows.

Thank you in advance for all your love and continued support. We are forever grateful to each and every one of you!

UPDATE: 3/12/24- 1:15pm

After 11 hours in surgery yesterday, Michael is doing well! His chest cavity shows significant physical improvement! Next will be extubation but that may be a while as he will need to stay on the ventilator about 48 hours. He awoke about 11:30pm yesterday evening and has been able to communicate with us some. We were able to share photos of his chest with him and his eyes opened wide in pleasant surprise! He approved my sharing the photos and video below. (With a nod :)).

Comfort and pain management are the focus right now. As well as monitoring his blood loss.

Thank you for the continued prayers! Please continue to lift him up as his body works toward healing! I know he feels the blessings of your prayers!

Next surgery for the other side will be scheduled 3 months from now.

Before on left. After on the right.

UPDATE: This week, Michael's labs showed an increase in the CO2 levels in his blood, therefore he has been admitted to the hospital a few days early. Surgery is still scheduled for Monday morning. Please continue to share this page, and please pray for Michael and the family! Thank you to all who have donated and sent words of love and encouragement! It means the world to us! THANK YOU!

Dear Friends,

We have all heard the phrase, “God will only give you as much as you can handle.” But when I think of my sister Emily, her husband Brian, and their beautiful children, I think, God must be convinced they are indestructible with super powers that can handle more than I think I have ever witnessed a single family endure. A heavy never-ending cross that rarely seems to lighten its load!

As most of you know, just a few months ago, my sister’s only healthy child, Madelyn, was diagnosed with Chiari Malformation and underwent brain surgery. By God’s grace it had a successful outcome and Maddie is thriving. Her only healthy child, my sister surrendered to the Lord, trusting that His will, not hers be done.

I often marvel at the faith my sister sustains and her love for the Lord despite what storms come her way, no matter the intensity, for no matter how long. Their story did not start recently and from the time Kristina came into the world 23 years ago, they have been plagued with the tortures and unknowns of Jeune Syndrome. To make matters worse, Michael, who had a 50% chance of being born with the same disorder, came into the world in worse condition.

In those days, surgeries were only offered on a trial basis and most children born with the deficiency never lived past their toddler years. In Michael’s early days, there were at least five times he coded and my sister and the beloved nurses who cared for him, were able to bring him back to life. His first five years he spent with a tracheotomy and was on a ventilator with tubes and tanks that my sister joyfully carried around to give him the most engagement possible in his restricted and fragile world.

Fast forward 17 years and 25 surgeries, Michael faces the greatest feat of his life. His chest cavity is too small to sustain life in him any longer and he is now in confirmed respiratory failure after surviving on 20% lung capacity for the last 2+ years. Another 3 surgeries are now required to try to save his life! The first two surgeries, his current titanium rods will be removed, ribs will be broken and new artificial ribs will be implanted to expand his chest cavity. The hope is that the extra space will allow his lungs to expand and grow. Though there is still no guarantee with the damage his lungs have endured, we remain hopeful. The final surgery is a spinal fusion which would correct the significant curvature of Michael’s spine.

Michael’s pulmonologist said yesterday, "Michael has been on thin ice… but the ice is now even thinner." His blood work has determined he is declining quickly and there is no more time. Action is required immediately, or Michael will not survive much longer. If you know Michael, you know he’s a fighter! His doc even said, in his condition, if it were anyone else, they would be intubating immediately! It is his will to live that has brought him this far!

Michael has a brilliant mind and has goals and dreams to not only live a full life, but to spend his adult life learning about his and other diseases and how he could cure them. He is graduating as a senior in June from Oregon City High School with honors and is joyfully looking forward to attending George Fox University where he will begin as a sophomore due to his incredible efforts and work ethic throughout his high school career. Despite Michael's condition he has maintained a job since the day he turned 16, saved up for a car and maintains his own car insurance. I couldn't be more proud of the man he is becoming!

A few weeks ago, I sent Michael a text just to let him know I was thinking of him. This was his response: “All I can think about is imagining myself kneeling right next to Jesus in Gethsemane. Before He was betrayed and arrested, He said, “Father, let this cup pass from me. But let not my will, but your will be done.” These same prayers I pray daily until the day arrives. I unite myself wholly to The Father’s will, whatever He asks of me. In return, I receive the Kingdom of Heaven.”

Michael will undergo his first surgery on March 11th at Seattle Children's Hospital where his anticipated recovery is a four week hospital stay. As you could expect, Emily and Brian will be at his side and all of this will place great strain on the family not only emotionally, but financially. Loss of income, astronomical medical bills are only the scratching of the surface when it comes to managing through strains that are inevitably coming to pass.

I can’t do much to help my family… but I can share their story! I can ask again and again for your help because with what they have endured, I cannot sit back and do nothing. My sister is truly a saint! They may all be strong and indestructible, but I believe it is with the love and support of others that has sustained them through their many years of struggle. It is needed now more than ever!! Please help if you can! Please share with family and friends!

Please also pray for the family. For Michael. For his survival and healing!

I thank you from the bottom of my heart!

Sincerely In Christ,

Nellie Parker

(Michael’s aunt)

For more info about Jeune Syndrome please visit: Jeune Syndrome Info