Help support John Seeleys continuous medical care

update- June 24th update written by Laurel (mom)

Hello friends and family! It’s been awhile since I’ve written an update about my son, John. To say I have been overwhelmed is an understatement. Since returning from Philadelphia with the devastating diagnosis, I have been inundated with daily phone calls and many appointments for John.

John’s health is declining rapidly. The brain damage caused by the progressive white matter disease is creating dementia like symptoms. John is wandering and becoming confused. His local medical team is trying to get him a tracking device and alarms/ cameras for our home. He’s only 13, so when he goes out the door, he is fast. He is experiencing “sundowners” just like a person with dementia would. He gets very aggressive in the evening time which he can’t control.

His mobility is rapidly declining. He is very unsteady on his feet, has trouble balancing, stands in place and shuffles his feet to try and get his bearings to move forward. We recently got a handicap tag for our vehicle to make things a bit easier for John.

John went on another trip to Philadelphia in late May where he had a neurological psychiatric evaluation done. The test revealed that the brain damage is substantial. He no longer can remember how to do many things including simple math problems, putting together puzzle pieces, reading comprehension skills have plummeted to way below average. He no longer remembers how to play his drums or guitar and has withdrawn and lost interest in the things he once loved. He won’t even play video games anymore. He requires full time care and needs help with bathing, dressing, brushing teeth, grooming and even eating.

John is also having visual problems. He will now have to see a specialist in Erie who is a pediatric ophthalmologist to monitor his sight. Initial testing two weeks ago is definitely showing a change in his sight. He is beginning to lose his peripheral vision.

John will need to take continued trips to Philadelphia for evaluations, Erie for his eyes, he will have an upcoming hearing test, and a swallowing evaluation, as this can become an issue in the future.

The quality of John’s life is currently not very good. He spends his days pacing around our dining room table for hours. The doctor said his body is trying to regulate itself and John just has an overwhelming need to keep moving. He never sits down. He has constant back pain from the neck spasms and head jerking that he can’t control. He has absence seizures throughout the day and sleeps for hours.

He has lost complete interest in anything he once loved: video games, movies, his music, playing instruments, and baseball. He has been attending Miracle Mountain Ranch for years and will not be able to attend this summer due to his diagnosis.

Our hearts are absolutely grieving as we watch this terrible disease progress in our sweet John. Any help you can give is greatly appreciated! There are so many needs our family has now and in the near future. Please keep praying and thank you!

Our friend Laurel Seeley and her family need financial help for continuous medical and physical care for her son John who is 13.

This is a post that Laurel wrote to let her friends and family know about the situation.

"My life and my family’s lives have been turned upside down in a matter of days. Thirteen and a half years ago, the Lord blessed me with my wonderful son, John David. I have enjoyed watching him grow into the sweet young man that he has become. He is smart, funny, silly, athletic ( favorite sport is baseball ), talented, an aspiring musician ( plays guitar and drums), and even discovered ( by his music teacher) that he has a fantastic singing voice. He is very well-liked and has many friends. He’s been active for years in Awana, VBS, Upwards basketball, tennis, golf, and his passion: baseball. John also enjoys video games, loves Star Wars and Avengers movies and inherited his mother’s love for rock music .

Now he is in for the fight of his life. As many of you know, and many may not, my son has a terrible disease called Addison’s Disease, but John has an exceptionally RARE strain of it called X-Linked Adrenoleukodystrophy. This disease made his adrenal glands shut down at age 3. His body can’t make blood sodium, regulate his heart rate or blood pressure, regulate blood sugar or produce adrenaline. He has been on hormone replacement therapy and has had many hospitalizations due to complications from this rare disease. He has been a strong boy and so brave and such a trooper through it all.

John started to display signs of cognitive decline over the past few months and significant and rapid decline over the past month. He was hospitalized this past weekend and an MRI taken of his brain revealed that his frontal lobes were drastically swollen. It was concluded by a team of specialists that the disease that he has been fighting against for so long has now begun to attack his own body, causing his brain to start shutting down and it’s happening at an alarming rate. I am devastated and my family is devastated over this news. We now have a battle in front of us that seems impossible and scary and unknown territory.

Medicine may work to bring down the brain swelling, and his endocrinologist is sending us to Philadelphia in short order to work with a specialist in the field of this disease and try to work with him, cognitively. Schooling and everyday life will be very different for John. This is uncharted territory as to what caring for my son will look like.

I will fight with everything I have in me to help him and I will trust Jesus even though I don’t understand. I know that He is the God who heals, delivers, and performs miracles and we need nothing short of one right now. I covet your prayers for my son. We need so much wisdom from God right now, help, and provision. Thank you! And thank you to those of you who have already begun praying, pouring out your love and support and have come along side of my family to help and bless us!!

The verse I will cling to through this is : Psalm 118:17 “ I shall not die, but live, and declare the works of the Lord.”

I don’t know what the future holds, but I know who holds John’s future. I must trust His plan for my son’s life." Laurel Seeley (April 16, 2:22am).