Down Syndrome Awareness Month hits home for Habersham family
Fri, 10/27/2017 - 12:05am NortheastG1
For some families, October being Down Syndrome Awareness Month may not have as great an impact. But for others, it’s everything.
Down syndrome continues to be the most common chromosomal disorder, according to the Centers for Disease Control and Prevention (CDC). Each year, about 6,000 babies are born with Down syndrome, the CDC reports, which is about one in every 700 babies born.
For Habersham County’s LaPrade family, Down syndrome is more than a disorder or statistics – so much more.
Hudson LaPrade, 3, brings his family nothing but love and joy, said his mother, Dana LaPrade.
“Hudson is bright and shining – he constantly smiles,” she told The Northeast Georgian. “He’s contagious with that smile. He loves to love. He loves with his whole heart – you can see it in his eyes. He hurts when you hurt, he laughs when you laugh.”
Hudson sounds like your average, everyday toddler with a zest for life and love for his family. But there’s something extra unique about Hudson – he has Down syndrome, specifically trisomy 21.
“I think they are little angels that God sent down on this earth to show us exactly how we’re supposed to be be,” Dana LaPrade said. “They love unconditionally. They want to be loved and needed just like the rest of us. The ‘best friend you could ever have,’ per big brother, Landen.”
LaPrade said she and her husband found out Hudson had Down syndrome while he was still in the womb. The LaPrades, Dana and her husband, Clint, had already had two children, Landen, 13, and Madison, 11.
“We went in for a three-month ultrasound and his neck fold was a little thicker than it should’ve been, so that prompted the doctor to do the harmony test, which separates out the mother’s blood and tests the baby’s blood,” she said. “That’s when we found out for sure that he had Down syndrome.”
Other signs a baby will be born with Down syndrome, LaPrade said, are a webbed big toe – “Oh, how precious,” she said – and heart problems, the scariest of associated issues.
“But thank God Hudson only had two minor defects that were healed within two months of birth,” she said.
According to the CDC, “About 50 percent of all babies born with Down syndrome are also born with a congenital heart defect. Babies with Down syndrome can be affected by a wide variety of heart defects. Many of these conditions will need surgery, while some milder heart defects might go away on their own as the child grows and may only need to be monitored by a health care provider.”
LaPrade said, upon learning of Hudson’s diagnosis, she and her husband – once on cloud nine over their bundle of joy – were devastated and “scared to death of the unknown.
We were “worried for a little boy, [wondering] would people accept him, would he be healthy, would he be loved, how would we handle him [and] how would we take care of him,” she said.
LaPrade said the “what ifs” were almost more than the couple could bear. “We cried and prayed and cried, wishing this hadn’t happened to our baby, that God would take that disease away from our little boy,” she said. “Now, [we’re] so thankful God didn’t give us our prayer. We needed a Hudson in our lives to make us think before complaining about the small stuff, to try and love no matter the faults. We need Hudson more than he needs us.”
But because Hudson is still young, the LaPrades are still learning about their blossoming baby boy and his needs through trial and error. “Everything is … repetitive over and over,” she said. “We have to modify our thinking for him. [We’re] so thankful for a pediatric doctor (Melanie Sims) that didn’t mind the constant texts and calls over and over about the smallest things.”
According to the National Down Syndrome Society (NDSS), there are three types of Down syndrome – trisomy 21 (nondisjunction), translocation and mosaicism. “Regardless of the type of Down syndrome a person may have, all people with Down syndrome have an extra, critical portion of chromosome 21 present in all or some of their cells,” the NDSS states. “This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.”
The NDSS further states all three types of Down syndrome are genetic conditions (relating to the genes), but only 1 percent of all cases of Down syndrome have a hereditary component (passed from parent to child through the genes). “Heredity is not a factor in trisomy 21 (nondisjunction) and mosaicism,” it states. “However, in one-third of cases of Down syndrome resulting from translocation there is a hereditary component – accounting for about 1 percent of all cases of Down syndrome.”
LaPrade said the family as a whole plays a big role in helping Hudson thrive. “We just have to adapt to his differences,” she said. “Things are just a little slower. Their muscle tone from head to toe is different than ours – it’s smaller. They have less muscle tone, so it’s harder for them to swallow. The things we take for granted, these kiddos work hard on. They have to work daily to learn to talk, it doesn’t come easy to walk, to hold a pencil, [but] never underestimate them. They are smart!”
LaPrade said, with so much consistency from so many important people in his life, Hudson’s already achieved so much. “From therapists to the best grandparents and wonderful friends, having a loving, patient brother and sister,” she said, “Hudson has changed our world for life, and his brother and sister have had to modify their lives for him, too.”
While some children may only visit the doctor when they have a cold, Hudson has spent his fair share of time in doctors’ offices. “We have been to every specialist out there, from a heart doctor to [ear, nose and throat], gastrologist, neurologist, you name it – every doctor possible to make sure everything is perfect with our little boy,” she said.
During his first few months of life, LaPrade said Hudson experienced acid reflux, which took a year to bring under control. “He had pneumonia numerous times, which led to clostridium difficile colitis from antibiotics, which in turn, we ended up taking adenoids and tonsils out,” she said. “He also had a fecal matter transplant, which took care of the the clostridium difficile colitis. Thank God other than those issues, we have just had normal kid stuff. Some kiddos aren’t as lucky. Heart issues are a big problem in a lot of Down syndrome children – heart surgeries over and over again and unfortunately, some kids don’t ever recuperate.”
LaPrade said Down syndrome, even for their family, remains a learning experience. “After I got over the pity party, we got online … researched [and] joined every group possible on Facebook to help us learn things about Down syndrome and what we could expect or possibly look for,” she said. “Before that baby was born, I had it mapped out – the ‘what ifs’ ([or] so I thought).”
LaPrade said no one can prepare a family for having a child with Down syndrome. “No one can ever prepare you for this life, of the possibility of your child possibly having a disability,” she said.
But for his family, LaPrade said Hudson has been the biggest blessing that anyone could ever imagine. “I tear up just thinking about how much he means to us,” she said.
LaPrade said she has since tried to become an advocate for new mothers of babies born with Down syndrome in Habersham County.
For the most part, LaPrade says Hudson is like any other active, happy boy. “Hudson loves to play baseball, he loves to ride his golf cart, he loves to sing and dance. … We all dance and sing just like Hudson,” she said.
LaPrade said Hudson is also a helper who loves doing his part to keep his home tidy. “He loves to clean up, he loves to put away, he loves to play and then put away, and then he loves more than anything to get that praise after he’s done with something,” she said. “[It’s] awesome watching him smile with approval.”
But there is something LaPrade wishes she could change. “If I can change anything about Hudson, the only thing that I would change is the worry that we had for those last … six months of pregnancy because we could not imagine our lives without him,” she said.
And for others who have the blessing of having a peer, friend or loved one with Down syndrome? “The only thing that I can say to anyone is that to [please] love them and to accept them, and to be able to change things to help teach them and for them to learn because it’s a lot easier for us to understand than it is for them,” she said. “They’re beautiful children that deserve the best.”