Meet Mark and his family

Images Captured By Red Button Photography

This handsome young man is Mark.  Mark loves to watch movies and play his Nintendo Wii.  He is a very friendly boy who loves to socialize with people.  He has two brothers who love him dearly, as he loves them.

Mark was about four months old when his mother noticed his eyes starting to flicked just like his brother James' had.  Both Mark and his brother have a condition called Hereditary Cerebellar Ataxia.  It is a nervous disorder that makes them unable to coordinate voluntary muscle movements, among other things.  Mark's parents were very shocked and angry when they found out about their children’s diagnoses; no parent is ever prepared to hear that their child is ill.  It was a very tough year for them, to say the least.

Mark and his brother both noticed something was different when they were not able to walk like other kids.  It was very tough on everyone involved when they learned that both boys would never be able to walk.  Even though they are developing years behind their peers, they are proud of the accomplishments that they have made, and their parents are proud of all three of their boys.  Mark was very proud of himself when he just recently learned to tie his own shoes.  They have learned that if there is something that they cannot master on the first try, they will try, try, and try again.  Mark and James will eventually be living in a group home, as their parents will no longer be able to physically care for them as they grow into adults.

Their mother's advice is this: to take care of yourself and your marriage because you are no good anyone if you are physically and emotionally drained.  Pray, pray and then pray some more.  She wants her boys to live a happy life and to be loved for who they are.

Story written by Billie Depatie 

Skylar's Story

Images Captured By Stephanie Fieldberg Photography

This is Tiny Light Skylar.  Skylar loves to watch The Gummy Bears. He could jump all day long. He loves watching the cows outside and rolling around giggling, making sounds like the goats.
Skylar was born one month early with a unilateral right cleft lip and palate, which was detected during an early ultrasound. His parents were initially devastated, but they reminded themselves that it was a fixable diagnosis.


Throughout his lip and nose surgery, Skylar remained strong. As heartbreaking as it was for his parents to hand their baby over to a team of doctors for surgery, the rewards have been amazing! His NAM fitting was hard. Skylar’s smiles turned to tears, as the NAM had to be worked on, being changed and washed several times a day.


The journey has been up and down but Skylar remains happy. His parents are proud of their strong boy as they look back at his progress. “He is an inspiration to us, because despite all he has been through, he seems to always have laughter and joy.”


Story by Angela Stephen-Dewhurst

Meet Brogan, Mairin, and Keira

Images Captured By Trevor Allen Photography

Meet Brogan. 


This sweet four-year-old was diagnosed with childhood epilepsy last year. His first seizure was just over a year ago, when he was only three, and it was sudden and completely unexpected. After a month, Brogan suffered another seizure. Within a few weeks he was having multiple seizures a day. 


Within a few months of the first seizure, the diagnosis of childhood epilepsy was made. His parents felt a sense of relief at knowing. Still, this was a terrifying time. The seizures scared Brogan, often causing tears. He has been strong and now has a better understanding of what is happening. He is cautious on bad days, which his parents stress is so important for his safety. And to other parents in her shoes, his mother says: “Epilepsy is terrifying, it’s hard, and it’s frustrating. Getting control over the seizures is difficult but you will you get there.” 


Despite these interruptions, Brogan is a boy who loves trains, cars, and trucks — his favorite movie being Cars! He is excellent at doing puzzles. He is a big help with his little sisters, who he loves so much. 


His parents hope that he will outgrow epilepsy, though it is unlikely. While there was a time his seizures were out of control, medications have helped this. He is now in control and as he gets older he understands what to do while having a seizure to avoid falling or hurting himself. “We try not to think too much about the ‘what ifs’ and take each day one step at a time.”



Meet Tiny Lights Mairin and Keira. 


These sweet twin girls recently celebrated their first birthday! While they share their journey, they each have their own distinct personality. Mairin loves dancing and making faces that make people laugh. Keira is always on the move, and she adds words to her amazing vocabulary daily!


At 20 weeks gestation, it was discovered that there were two babies and that they had TTTS (Twin to Twin Transfusion). Without medical intervention, there was almost no chance of survival for the twins, so their mother underwent surgery that saved their lives. The girls were born at 31 weeks.


The TTTS has come with many other problems for the girls. Both girls have some brain abnormalities, and it still is not certain what this will mean for their futures.  Mairin also had a cloudy, almost white left eye, which has required two surgeries.  She has no vision in this eye, and her parents are hopeful she will not lose the eye.  Because Keira was the donor TTTS twin, she was much smaller and at higher risk for brain damage in utero. She is doing great now, with only slightly delayed motor skills. Mairin, however, is significantly behind in her motor skills.


The twins’ parents worry for their girls, as there are concerns around their brain abnormalities. Still, “there are worse things than limitations.” They find that the girls compensate for their limitations in other aspects. They are happy girls with a loving family. While there have been such big worries for these sweet girls, they have proved to everyone just how strong they are.


Stories by Angela Stephen-Dewhurst

Meet Camryn

Images Captured by Cindy Moleski Photography Studio

Meet Camryn. She is only two, but holds a pencil like an artist (or so her mom thinks!). She loves music and dancing. She makes people laugh and is always hugging. “She is just an inspiration of her own!”


At 17 months old Camryn was diagnosed with severe sleep apnea as well as overly large tonsils and adenoids. There have been several other diagnoses along Camryn’s journey that have gradually gone away. Because of the severe sleep apnea, Camryn has developmental delays. Her parents felt relief at the diagnosis because Camryn had been ill for so long and had already gone through so much testing. They finally had answers and could move forward.


After surgery, Camryn’s improvements were amazing. Knowing what they were dealing with meant knowing how to help her developmentally. Camryn’s journey has been hardest on her wonderful big sister Jordyn, who was only four when Camryn was born. Because Camryn was ill, this meant a lot of attention on her and not a lot left for Jordyn, who ended up with separation anxiety.


Camryn’s parents learned a valuable lesson and encourage other parents with multiple children to not push other children aside to focus on one child’s illness. They also recommend building a support system of family, friends, and others going through similar situations. From here they see Camryn’s developmental journey only going uphill! While her mother worries that she will be behind in school, she hopes that what Camryn has been through will make her a stronger person. “She is a strong-willed girl who is ready for the world!”


Story by Angela Stephen-Dewhurst