One little Parsons Viking, Kamen Hennen, had a great start to his kindergarten year, as his family was reunited the day before school started, and his mom, Kailee Hennen, got to escort him to Sneak Peek the night before.
Kamen’s mother and baby brother, Valen, had been at Children’s Mercy Hospital and the Ronald McDonald House in Kansas City for 259 days.
“He’s so excited we’re home. Every day he comes home, he goes straight over to the hand sanitizer and goes right to Valen,” Kailee said.
Valen was hospitalized Nov. 23, 2022, a week after he was born, when newborn screening tests detected he had a group of genetic disorders called SCID (severe combined immunodeficiency), requiring his immediate isolation.
SCID is the result of mutations in different genes involved in the development and function of infection-fighting immune cells. Essentially, Kailee said, while Valen appeared healthy at birth, SCID left him with no immune system, having few or no T-cells; therefore, Valen was highly susceptible to life-threatening severe infections.
Kailee had never heard of the syndrome, which impacts about 1 in every 58,000 babies. She decided to share Valen’s story early on in their journey, to raise awareness.
To combat the SCID, Valen required a bone marrow transplant; however, he had to be four-months-old before he could get the transplant, and then a matching donor had to be found. Things fell into place and the transplant was completed March 20. Valen had to remain hospitalized for 100 days following the transplant while his body stabilized. Despite his continued isolation, he faced complications from idiopathic pneumonia, leading to severe respiratory distress.
“It happens with a lot of the stem cell transplants,” Kailee said. “He ended up in the PICU (pediatric intensive care unit) twice.” Still, the little, future Viking showed his strength, and beat the illness.
“And I have to say, the people at Children’s Mercy set the bar for what every hospital should be like. For being there as long as we were, I don’t have one complaint,” Kailee said. “They’ve just been great.” Given Valen’s mandatory isolation, Kamen only got to see his baby brother one time in the first six months of his life. After being released from the hospital May 27, Valen had to remain nearby in case of any emergency, and due to required doctors’ visits three times a week. The Ronald McDonald House was their only option. Once they moved to the Ronald McDonald House, family brought Kamen to visit his mama and baby brother every couple of weeks during the summer, but it wasn’t the same as the family being together at home.
Kamen is thrilled to now have his baby brother and mama home, and Valen is doing wonderfully under the watchful eye of his big brother. Every one that comes in the door is told by Kamen to go directly to the hand sanitizer.
“He is already protective of his little brother,” Kailee said.
There are times when Kamen will lay down beside his brother and fall asleep with him.
“It’s the little things you don’t even think about that matter,” she said.
Valen still has to travel to Kansas City once a week for doctor’s visits to ensure his recovery continues. In a few months, he should be able to go out in public more, though they have to exercise caution. Valen is still on a feeding tube and he will have to go through therapy to learn to eat solid food, but otherwise, he is healthy, happy and quickly catching up.
“He is starting to get in his jumper a lot more now,” Kailee said. “He is rolling all over the place and he is starting, when he see’s something on the blanket, he is pulling himself towards it. He is figuring things out pretty fast.”
And, Kailee said, she is settling in to being the mother of two, which may sound odd, but she has not had the chance to care for both boys at once, until she returned home a couple of weeks ago.
“I’ve never had them both together until now. It’s been either Kamen or Valen. Now I have them both together. It’s pretty cool. It’s what I’ve been waiting on,” Kailee said. “It’s been a little hectic adjusting to it, but in the best way. I can finally do all the things you want to do as a mom, like getting your kids ready for school. It’s kind of that hectic morning routine that a lot of mom’s dread, but I love and am excited for. It’s great.”
Valen’s story is such a happy one, the Ronald McDonald House is featuring Valen’s story on Red Wednesday, when they sell KC Chiefs flags at McDonalds to raise funds to help families like the Hennen’s.
“I think that’s amazing. His story will help raise money for the Ronald McDonald House as well as being awareness of SCID,” Kailee said. “I’m excited.”
