As a baby develops, its cerebellum is formed and connects to its spinal cord. Some children, however, are born with an unfinished cerebellum which grows and fills up the hole in the bottom of the skull.
Logan Weaver, a spunky five-year-old boy, was born with this condition, known as Chiari Malformation. As a young child, his mom Linda noticed something different when he first started walking. She cycled through doctors, but it wasn’t for a full three years that anyone would be able to detect something. Finally in 2011, a physician found a tumor in Logan’s leg and the Chiari Malformation.
Though the family felt relief for a diagnosis, there were still too many questions.
Chiari is a rare disease that affects only 1 in 1,000 births. Because of this, there’s such little research done and therefore no cure yet. The only thing that can be done is a decompression surgery, which relieves pressure from the brain.
He has been in and out of hospitals throughout his life. Logan, his sister Summer, and his mom are from Maryland, but have traveled to many different states along the way to meet with various doctors.
And that’s how they found out about the Ronald McDonald House.
“We’ve been to houses from Orlando, Florida to Wilmington, Delaware.” Linda knows that with each visit to the Ronald McDonald House comes a doctor’s appointment, a few x-rays, and maybe even a surgery; but her kids love the adventure of it. She admits that it’s more like a vacation to them.
Although each trip is stressful, particularly with such lively kids, Linda is grateful for the weight that the Ronald McDonald House lifts off her shoulders. She’s tells us how appreciative she is that it’s “A safe place to be, offers financial relief as to the cost of hotels and food that is provided, and helps take a lot of worry when it comes to financing the trips to distant hospitals.”
With a son requiring multitudes of hospital visits and both twins that are full of vivacious energy, Linda will take as much support as she can get.
Logan is continuing to grow into a healthy little boy, with loads of energy and zest for life. Still, it’s been a long journey for all of them, with some days feeling like an endless uphill battle.
“I just take it day by day and thank God for places like Ronald McDonald House.”
On February 15, the day after Valentine’s Day in 2012, Nachelle Jones found out she was pregnant. Not long after, she found out she would be having not one, but two. “I had all kinds of emotions about that.”
As if this double whammy wasn’t enough of a shock, Nachelle then was told that there were complications and her girls would have to stay in the hospital for a while after their birth. Through the sadness, she prayed and clung to hope. When a social worker told her about the Ronald McDonald House, Nachelle had no hesitations. She was willing to do anything to be able to stay close to her girls.
She has really loved being able to watch them grow at every step of their development. They’ve even begun to gain their own personalities. “One of them is a little diva and has to have her diaper changed the second it gets a tiny bit wet. The other is a little drama queen; she needs ALL the attention.” She says that faith has played a huge part in helping her to cope with this roller coaster of emotions, in addition to the support of her mom.
Though it’s hard being away from family and friends throughout this ordeal, she doesn’t take for granted being able to spend so much time with her twins. Her home is nearly 100 miles away, so Nachelle appreciates the House’s close proximity to the hospital. And her favorite part of the Ronald McDonald House itself? “The kitchen! There’s always so much food.”
Each day is a struggle while her girls are in the hospital, but Nachelle has faith that they’ll be just fine. Until then, she can’t wait to bring her little diva and drama queen home.
Meet the Bailey's
Mike and Penny Bailey received a vivacious new addition to their family of four just six days before Christmas. They were ecstatic about their new baby boy, but were prepared for the complications. Before he was born, they discovered that he wouldn’t be strong enough to leave the hospital right away. And in addition, would need surgery at just a few months of age. “The scariest thing is not knowing the outcome,” Mr. Bailey admits.
They first heard about the Ronald McDonald House from the hospital. “They gave us a few different options, and this seemed like the most suitable.” There were hesitations, however. Coming from a rural area, the city was less than appealing. “All cities are alike; it can be a certain way on one side of the street and then completely different on the other.” While Richmond is certainly no exception, they’ve gotten more comfortable and accustomed with time.
Mike fluctuates between home and the hospital so that he can work, but Penny enjoys the daily interaction with her son. The hardest part, she admits, is being away from family. The couple was even in the House on Christmas. “It just felt like a normal day,” Mrs. Bailey admits. But they agreed that the holidays aren’t about the presents and the glitzy tree. It’s about family and faith and life’s constant blessings. Which their son certainly is.
They can’t believe how amazingly far he’s come in such a short period of time. Though there have been a few roadblocks, they stay strong through each other and through their faith. They confess how difficult each day can be, with the frustrations of an occasional setback or hiccup. All in all, though, they’ve been pleased. Their son is steadily gaining weight; his heart is becoming stronger, and his progress continues to flourish.
They’re excited to finally bring him home…but in the meantime, Penny doesn’t take it for granted seeing her son every day.