Beach Park parents work to raise funds for research, awareness
By At first glance, Brooklyn and Jayden Boyce are like other children their age.
Four-year-old Jayden, in his Chicago White Sox T-shirt, lights up at the sight of “Bob the Builder” on TV and enjoys pushing his large “Bob the Builder” truck around his parents’ living room.
Brooklyn, 1, with her lush, blond curls, clings to her dad as he prepares her dinner.
What isn’t likely apparent is Brooklyn and Jayden suffer from a rare genetic disorder called Sanfilippo syndrome.
Their parents, Stefanie and Justin of Beach Park, face the possibility their young children may not live past their teen years. Stefanie and Justin cling tightly to their faith and spend time raising money for Sanfilippo research.
“You make a choice every day. You can either live in a world where you’re counting down the days until your kids are going to die, or you can live in a world where you enjoy every moment,” Stefanie said.
Doctors diagnosed Jayden with Sanfilippo when he was just 3 years old. When Jayden was born, he had a larger-than-normal head and an enlarged liver, Stefanie said, but doctors weren’t concerned.
Then, Jayden started lagging behind his friends in speech, Stefanie said.
“We just wrote it off and waited,” she said. “But in the back of my mind, I knew something was off.”
When Jayden was 3 years old, doctors suspected his speech issues, enlarged liver and larger-than-normal head may be related. A specialist suggested he may have Sanfilippo, a diagnosis confirmed through urine and blood tests. Just one in 70,000 children suffers from Sanfilippo.
Both Jayden and Brooklyn were diagnosed with the syndrome in October 2009.
People with Sanfilippo, Stefanie said, lack an enzyme that breaks down a sugar called heparin sulfate stored primarily in the central nervous system. The sugar starts to build up and causes damage to the brain.
Stefanie said that from infancy to around age 2, children with Sanfilippo are pretty normal. During the second stage of the disorder, from ages 4 to 10, these children become hyperactive and restless and often have problems sleeping, Stefanie said. After age 10, they often lose their ability to walk and eat, requiring the use of feeding tubes.
“A lot of them are severely mentally handicapped and are never potty trained,” said Stefanie. Jayden, she said, still wears diapers.
“We’re at the cusp of people starting to notice he’s a little different,” she said.
Being at the start of the second stage of Sanfilippo, Stefanie said, Jayden is somewhat destructive and doesn’t sleep well at night.
“We have good days and bad days,” Justin said.
While Jayden is starting to display some behavioral issues, Stefanie said, her son “has this very gentle spirit about him.” At preschool, he saw a classmate crying and tried to console the student, patting him on the head.
“That’s his spirit,” Stefanie said. “We just feel so blessed. They don’t judge people. They don’t wake up and worry about tomorrow. The beautiful thing about Sanfilippo is they don’t know they are any different.”
Having children who suffer from a rare genetic disorder can be tough, Stefanie acknowledged.
“More, it’s the emotional thing,” she said. “Most parents don’t put their kids to bed and think, ‘I hope they wake up in the morning.’”
What Stefanie and Justin have done, however, is make a conscious decision to “thrive, not just survive.” Ultimately, they say, God is in control.
Stefanie said she and her family attend Immanuel Church in Gurnee. “The only thing that keeps us grounded is our faith.”
At present, there is no cure or treatment for Sanfilippo, Stefanie said, which is what makes fundraising for research so important. The Boyce family has been working with various organizations to raise money for research, including with Team Sanfilippo. The organization is made up of other families whose children suffer from Sanfilippo.
Stefanie and Justin raised $6,000 through a garage sale and donated it to Team Sanfilippo.
“The reality is it very well could be life or death for our kids,” she said. “When it’s rare, nobody’s investing. It’s up to the parents to raise money and awareness.”
Thank you! Article By Korrina Grom and Photos by Steve Lundy http://www.dailyherald.com/article/20110222/news/702229974/photos/EP2/#navAnchor
God has been faithful with our travels and we’ve arrived in India! We arrived in Chennai at 1:30am and spend a short night in a hotel. After waking up we saw the burial sight of Thomas and hopped on a train for Tenali. It was so great to meet Suresh and Christina and hear more about their ministry. We finished dinner and then connected with home.It’s in the upper 80s! A far cry from the snow for us Chicago boys!
Feel free to follow the boys at http://www.toindiawego.com/. It was comforting to see Jut on Skype today and know he got there safe. The Internet was down the entire trip so the last time we spoke was 4PM on Monday Chicago time. It is now Thursday morning 1AM India time (Wednesday 1PM our time) as I write, and I am praying Jut is finally asleep. I am so excited for him and realize in the short amount of time....I miss my teammate. I am so proud of him and really am recognizing that "two become one" mentality. I feel like a part of me is missing, and that part of me is in India. We are a team, and I like it.
Jut Skyped in during Brooklyn's playdate with the triplets! Here is a cute pic I stole from Ryan:
We loved having them!
in order Rogue, Phoenix, Jade
It doesn't take very long for something, or someone to set me off. You don't have to know me long, or at all sometimes, to know that I struggle with patience and pride. Grace and humility are not my spiritual gifts. No where close. So-what do you think God spends many of my days refining in me? You got it-patience and pride. If everyone would just do it my way the first time, I wouldn't have to be patient, right? :) It seems that everytime I share about Christ-when I am leading others like at youth group-I get smacked with my own struggles to keep me in check.
I hate that I go from 0 to 60. I am fine one moment, than someone says or does, or doesn't say or do....and I am fit to be tied. My blood pressure rises. I begin the attack, I want to be right, I want the last word, and you best know it takes everything in me to mutter the word "sorry". Lately, there has been a voice in my head that is very calming and actually gives me a bit of an out of body experience. It tells me to chill but because it is against my very nature-I don't even know HOW to stop. I don't know HOW to do humble, or patient, or kind, or loving, or grace, in those moments.
I want a hall pass from God from "being stretched: 102" The class sucks and it is always scheduled when I am the most busy. Can I drop it? I wish....kinda. I truely do want to be a better person but my ugly never seems to go away. I mean-I think I get to a point where I am walking with God, trusting Him...lalala..than WACK. I feel like the wind is punched out of me, the bottom drops out, the life that is pure chaos that I have been trying so hard to keep in motion.....crumbles. I can't explain it. It is the straw that breaks the camels back. I do not have the time to talk to everyone, thank everyone, get back to everyone, file everything, attend everything, anticipate everything, cook everything, console everyone, listen well, sit intentionally with my children and do laundry. I can't do it. And I resent the pressure. And I want to cry. Maybe even ugly cry. The straw is so light, but it's just one more thing AND it is heavy. Meaning, by itself, the issue is not hard, or bad even...a lot of times it is good and what I really WANT. Like writing a thank you to someone I love. Or sitting with my children. Or listening to a friend. I WANT that so bad. It is just that each "thing" adds up. And the sum of the weight is too heavy to carry.
I don't mean to hurt anyone's feelings....but I am committed to being honest in this blog...I am emotionally spent. I can barely handle my own emotions, let alone other peoples. Not their life experiences-stories etc. (that makes me feel normal), but i mean conflicts or me "offending" them. I want more than anything, to change my focus from me to others. It is my battle cry. I want God to refine this SO BAD. But, I am incapable right now of navigating other peoples feelings. For example, if I offend you, if I don't give you what you need, if I don't read between the lines, if I don't anticipate what you want, if I forget to write a thank you or get permission, or wish you happy birthday, write you back, or forget to confirm a bus. My fault? Absolutely. Do I need to take responsibility? Sure. Sorry. Sorry I can't do it all. Sorry I am human and don't have all my ducks on a row. Emotionally-I can't handle your feelings and mine. I am desperate to get to a place where I can and try desperately to focus on others and not me....but getting honest means getting real and admitting I literally am unable to maintain the quality of my relationships. I hate this but it is true.
God-refine me. I know I can do nothing without your strength. I am emotionally done. Show up and make me into your image day by day, moment by moment. Amen
Thank you all for listening, following, voting, praying, checking, sharing, posting, telling, and getting creative! I love you all!
Jayden, Liv (Hubert) and Brooklyn, along with our families, and the Sanfilippo community thank you!