COMMERCE TWP., Mich. (WXYZ) — As we celebrate the holidays with our families it's important to remember the small blessings many of us take for granted.
Whether it's the roof over our heads, food on the table, or simply our good health and the health of our most precious gift, our children.
That's the message a Commerce Township family who is dealing with unthinkable grief wants to leave you tonight as you approach the new year with your friends and loved ones.
For David and Amber Negele wedded bliss came 7 years ago, followed by the birth of their twin boys Jack and Benjamin who are now 2 1/2 years old.
WXYZ’s Carolyn Clifford asked, “Tell me a little bit about Jack?”
“He is probably the sweetest little boy you could meet, just so loving,” said mom, Amber Negele.
“They are polar opposites,” said dad, David Negele.
“Benjamin, he's our wild child,” said Amber and David finishing each other’s sentence.
These two are inseparable. They play, bathe and sleep together side by side like most twins do but Jack, a daddy's boy, is a little different.
“He's so sweet, he doesn't have a bad bone in his body when his brother comes up to take toys, he's like eh, I'll just go on to the next thing he's a total lover,” said Amber.
“Over the last year their differences have become more and more apparent especially as David and Amber began taking notes and comparing their boys' progress.
“He was always a little bit behind he'd eventually get there to the milestones,” said Amber.
Jack was delayed with walking, talking, crawling even saying mama and daddy. Then last January Amber began to worry.
“He would kind of look at me zoning in and out like, do you remember me do you know who I am,” said Amber.
For ten months specialist after specialist would examine Jack, all the while Amber was doing her own research until she came across a mom's Instagram post about Sanfilippo syndrome.
Her daughter looked just like Jack. She had really thick eyebrows, blond hair, thick lips looked just like Jack.
The symptoms fit but that would be the worst-case scenario but when Jack underwent testing, she got the dreaded call.
"As soon as she said, 'have you heard of Sanfilippo?' I just about fell to my knees that was probably something on my brain for like six months,” said Amber.
Amber messaged her husband, “I need you to come home right now,” said David.
“I saw her for the first time, and she said it's the worst case it's what we thought,” David added.
“Yea,” said Amber.
“Oh my God, he's 2 1/2 and I know enough to know the life expectancy is short and just everything kind of raced through my mind,” said Amber.
Sanfilippo is similar to Alzheimer's or dementia but affects a child. Jack's case is quite severe, meaning he likely will not make it to his teenage years.
They do forget how to walk and how to talk because it directly affects the brain.
“It's just extremely hard cause we're so broken inside but you just have to keep going,” said Amber.
“You've got to have hope because you have two little boys to take care of?” said Clifford.
“I think that's the thing that keeps us going is that Jack's here with us now. He's happy as can be so we need to make it as normal as we can for Jack and Benjamin right now,” said David.
Benjamin is fortunate.
“Did they explain to you how Jack would end up with it and Benjamin would not?” asked Clifford.
“I did get Benjamin tested he isn't even carrier,” said Amber.
So, during this holiday season, there's a message this family would like you to hear.
“Be thankful, you have a healthy family and healthy kids you might take it for granted always just give the biggest hug and just love them,” said David.
“Each day has been so beautiful, like we just need to slow down and just really appreciate the four of us together,” said Amber.
So, their mission while little Jack is still on this earth is to fight for a cure. If not in time for their son, for other children.
They are raising funds for research through the Jack's Cure Sanfilippo Foundation page. All funds collected will go toward research and the funding of clinical trials.
