September 13, 2023 at 6:00 a.m.
One-year-old Nile Luxem is changing lives.
It might be through his infectious smile as he interacts with his parents, Jason Luxem and Crystal Altendahl, of Melrose, or when he is playing with his siblings – Mackenzie, 12, and Dominic Timp, 9, and Alexander Middendorf 6, Crystal’s children; and Kaylee Damhoff, 15, and Errin Luxem, 12, Jason’s children, who love him dearly.
Nile is a happy go-lucky baby boy who loves eating puff cereal. He is reaching baby milestones, just at a little slower rate.
“He refused to rollover at first and now you can’t stop him from rolling over,” Jason said Sept. 6.
On Feb. 8, five months after Nile was born Sept. 4, 2022, he was diagnosed with Down syndrome, which followed an infantile spasms diagnosis, after he had seizures.
“He’s not a Down’s baby; he’s a baby that has Down syndrome,” said Crystal, an advocate for educating people about children with special needs. “My goal for Nile is for him to be treated like any other kid and the only way that can happen is if I help educate people on his diagnosis.”
As they learn about Down syndrome, so will others.
There was no indication before Nile’s birth that he had medical conditions.
“Everything went great with my pregnancy,” Crystal said. “I had monthly checkups because I was considered advanced age at 38.”
Their medical journey started when Nile had spasms, which they first thought were from immunizations he received during a well-baby check. From the St. Cloud Hospital, they were referred to Children’s Minnesota Hospital in Minneapolis where it was determined he had infantile spasms, a rare but serious type of epilepsy that often looks like a sudden, brief stiffening of a baby’s muscles.
“It is more common in babies between four and 10 months,” Jason said.
Nile was placed on large doses of Prednisone to decrease the seizures.
“He gained so much weight and he was out of it, but he didn’t have seizures,” Crystal said.
Over six weeks, he was weaned off Prednisone, with regular brain scans scheduled. Nile has been seizure free since they left the hospital in February. They do carry an EpiPen in case he does have a seizure.
Tests determined Nile did not suffer brain damage from the seizures.
Since epilepsy can occur in people with Down syndrome, a doctor suggested genetic testing. The test verified Nile has Down syndrome, a condition where a person has an extra chromosome. Crystal explains there are three types – mosaic, translocation and trisomy 21, the latter which Nile has. Trisomy 21 is the most common type of Down syndrome.
“This type isn’t hereditary and I used to say it was a fluke in the system … , but Nile isn’t a fluke. Nile is exactly the way God intended for him to be. He doesn’t make mistakes. There are no flukes to his work,” Crystal said.
There were – and still are – few outward signs Nile has Down syndrome.
They were in disbelief and after talking it through, they knew it would be OK.
“We are part of the lucky few,” Crystal said. “We are blessed with Nile.”
They researched and learned about the medical condition from medical professionals.
Nile received further testing, including for his heart, since there may be other health factors with someone who has Down syndrome, including poor circulation. They are thankful there are no irregularities, other than a slight hearing deficit in one ear, which will be monitored.
“We go to the ENT doctors for his breathing because nasal passages are smaller,” Crystal said.
Nile’s immune system is weaker, which means if he gets sick it may take him longer to recover.
“He had a respiratory infection over the winter, and it took him two months to get over it,” Crystal said. “There were many doctor and ER visits.”
Weighing 7 pounds, 10 ounces at birth, Nile is now up to about 22 pounds.
“He’s a beast,” Jason said smiling as he watches Nile eat puff cereal.
Their support system has been phenomenal, Crystal said, starting with family and friends.
“We went to a picnic this summer in Sartell as part of the Down Syndrome Association of Minnesota, and met other families,” Crystal said.
Through the West Central Education District, therapists come to their home every two weeks to help Nile’s with his fine motor skills.
“Basically, helping him reach his milestones,” Crystal said. “He’s a little behind but nothing they are worried about.”
Through the Jack’s Basket organization, Nile received a basket filled with children’s items, including sensory toys, that assist with his fine motor skills.
Nile has experienced much in his young life.
“He loved going to a twins game,” Jason said.
Wednesday night Nile accompanied his parents to Trivia Night at JD’s Taphouse in Melrose. He is showered with hugs at the Melrose American Legion, which Jason, a veteran who served in Iraq, manages, along with being head grounds person at Meadowlark Country Club in Melrose.
“Nile loves hugs and cuddles,” said Crystal, who works at the Greenwald Elevator.
“And he loves to roll around on the trampoline with daddy,” Jason said.
They look forward to a long life for Nile, a name chosen by Jason because it means strong, with a middle name of Matthew after Jason’s brother who passed away unexpectedly.
“Nile’s going to be my little fishing buddy,” said Jason, who loves seeing the pure happiness on their son’s face when he experiences something.
“He’s so happy,” Crystal said. “We’re blessed to call him ours.”