Nathan is your average 120 mile per hour rough and tumble 5 year old little boy. He loves minecraft, cars, Legos, mountain biking, and visiting his best friend Mr. Brad at the firestation. He gets dirty knees and gives big squishy hugs. He is so brave he never let's you see what is underneath.
Nathan was born with a rare congenital disorder called Shwachman Diamond Syndrome. This is a disease that affects every organ. We have over 10 doctors and specialists from 3 different states that take the very best care of Nathan.
SDS is most characterized by Bone Marrow Failure. Because of this Nathan undergoes a bone marrow biopsy each summer to make sure he has not progressed to leukemia yet.
He is kept healthy with a feeding tube because his stomach is partially paralyzed, however he can eat by mouth sometimes. He is on multiple inhalers and lung treatments due to his congenital lung defects.
Nathan is brave, but so is Evelynn. Evelynn is Nathan's 9 year old big sister who has Autism Spectrum Disorder. She loves her brother fiercely but too often gets overshadowed. She has the biggest heart, loves animals, and is an amazing artist.
We're your average chaotic family. The kids are homeschooled and we attend as many things as allowed due to germs and isolation.
We are huge advocates for signing people onto the bone marrow registry. One out of every 12,000 people will be a successful match for someone. It's completely painless to join and Nathan is at risk of needing a transplant someday.
To learn more about Shwachman Diamond Syndrome and to donate to find a cure -
And finally - to follow Nathan's journey
Gavin Wilcox 11, was diagnosed in 2017 with a brain tumor after he collapsed while getting off of his school bus.This tumor caused seizures, among other cognitive and behavioral issues.
December 26th 2017 he underwent brain surgery to remove the tumor at DeVos Children's Hospital. This surgery was unfortunately unsuccessful and barley 'scratched' the problem.
After seeking a second opinion at the University of Michigan and going through numerous testings and scans he, again, underwent a second brain surgery on November 26th 2018 (11 months to the day from the day of his first) in Ann Arbor.
This 13+ hour surgery proved to be a success for the removal of what was found to be numerous tumors located on his left temporal lobe.
Many more scans and test will be done at the U of M in the next year to monitor the area as well as his cognitive abilities but he is finally on the road to recovery!
His spirits were tested during this very rough year, but remains optimistic to this day. Aside from a few language issues he is still working through, The feeling of finally having Gavin back to himself again is truly a blessing.
His strength and courage has not only allowed his healing to continue, but has inspired the entire family as we have gone through the coaster ride of stress and anxiety.
Amanda is a 37 years old, single Mom of two beautiful children, Kayla (9 yrs) and Cameron (6 yrs). She has been diagnosed with Stage 4 metastatic breast cancer. Amanda is a nurse at Spectrum Health Gerber Memorial hospital in Fremont, as the manager for Surgical Services. She and her children live in North Muskegon and have so their whole lives. Amanda is currently going through chemotherapy and has been attempting to keep working full time. Following chemo, she will be having several surgeries and radiation therapy. Continued maintenance IV therapy is indefinite, due to the cancer being metastatic. So far, she has had good results from chemotherapy and the tumors in her breast and liver have shrunk significantly. Amanda is working hard toward a positive outcome, but there is definitely a long road ahead. She trying her best to remain strong both physically and emotionally for her kids. They are the loves of her life and she always want to be there for them. Amanda and her family are forever grateful for any help to make their situation a little easier.
Gunner is a wild child, a free spirit, a gift from God that amazes us every day- he’s got two older sisters (11 & 9) and a young baby brother (7m old). Gunner loves anything with a motor; loves outside, loves to be like his daddy & his papa’, enjoys hot-wheels, anything with a motor, power rangers, muppet babies, discovering & playing in the mud.
Gunner is 3, he’s our fighter and this is his story,
Gunner A. Smith born 10/16/2015, coming into this world as a premie (a rather large one) 8lbs 9oz 21 inches long. Gunner had a rough start; with his heart rate plummeting an emergency c-section had to happen. Gunner was considered DOA (dead upon arrival), revived three times before he finally stayed with us. Gunner was blue, pulling hard, and couldn’t breathe well. Gunner was intubated and diagnosed with RDS (respiratory distress syndrome) and was sent to Saint Mary’s Hospital NICU in Grand Rapids, MI where he spent a week getting better. Even after we left the hospital Gunner has/had scarring on his lungs and to this day when Gunner gets a cold/flu it immediately turns to Croup- so we try to remain a clean and germ free home, however, with a wild child- nothing slows him down.
Gunner faced many trials at an early age with his birth, but it didn’t stop there; when Gunner was 18m old he had to get tubes placed in his ears so he can have relief from chronic ear infections - which has caused Gunner to now battle with Speech/Language Delays. We are trying to correct these issues and keep him from getting frustrated with himself. Fast forward to 10/2018, Gunner was having headaches and for a toddler to have headaches is uncommon. Strangely, he wouldn’t have them until he ran, played hard, over exerted himself, etc. When he got the headaches he would fall to his knees, or hit his head with his hands, and scream in pain- that would last for 1-3 minutes until he then looked up at us and said “all done”. Puzzled we got an urgent sedated MRI at Spectrum Health Children’s Hospital where he was diagnosed with fluid on his brain that completely pushed his brain over to the left side of his head. At the time we didn’t know the cause, however, an emergency brain surgery was decided on 10/12/2018. Upon opening Gunners head doctors found he had an Arachnoid Cyst with a Subdural Hematoma. The magical thing about this finding was Gunners brain had created a membrane over the wounds that secreted the same medication given to stroke patients to keep their blood thinned. This is amazing to the because Gunners brain did this all on its own, otherwise, Gunner could have or should have had strokes, seizures, or died. Gunners Arachnoid Cyst cannot be removed because it’s wrapped in brain matter, veins, and arteries. The tumor will have to be monitored his whole life. Doctors must watch for refilling of the brain, to watch as he grows. Doctors are interested in what his outcomes will be when he plays sports (no contact sports) or when he exercises in gym. Gunner is the youngest recorded child to have had this and will continue to be monitored.
While we thought we were in the clear and our hearts were calming down - Gunner 10/26/2018 plummeted. He was very sick, waking every 30 minutes screaming in pain, fevers of 101-102, lethargic, stiff, and miserable. Gunner had many tests done- everything came back normal- but one final test a Lumbar Puncture proved in 48 hours to show Gunner contracted Pseudomonas Aeruginosa a highly deadly CSF meningitis infection. Gunner spent 2 weeks at Helen DeVos Children’s hospital where he was then released home on IV therapy with a PICC line and home care.
While in the craziness of October/November Gunners Medicaid cut him off in those months leaving Gunner without insurance while all this is going on. Medical services, bills, home care, medications, etc all while trying to care for our sick child- a new baby and other 2 children at home. Gunner today continues to be monitored- he will continue to be checked every 3 months with an MRI and a possible lumbar puncture to check the infection. The PICC line was removed due to a risk of infection and the doctors are seeing what Gunners body does to fight and heal itself now.
Gunner is a fighter- he’s so loving, carefree, and the sweetest child.. He is truly a medical mystery, and a blessing to us.