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Volleyball: Lydia's Night: Marcus' team raises money, awareness for neurofibromatosis
FLOWER MOUND -- When 4-year-old Lydia Hood was on the court for player introductions Tuesday as Marcus' volleyball team hosted Flower Mound, the daughter of Marcus social studies teacher Jesse Hood and his wife Dawn was full of energy, spending much of the time jumping or rolling on the court.
It was typical behavior for a youngster.
Just not of one that had only recently completed a 12-month session of chemotherapy.
Hood was on the court to throw out a mini volleyball she had decorated earlier in the afternoon and to be introduced as an honorary member of the team, part of the second annual "Lydia's Night", a fundraiser to help raise money and awareness for neurofibromatosis, which Hood was diagnosed with when she was just 9 months old.
Neurofibromatosis is a condition in which nerve tissues grow tumors (neurofibromas) that may be benign or may cause serious damage by compressing nerves and other tissues.
For the second consecutive year, fans and faculty sported blue "Lydia's Night" shirts that were sold before and during the game with the proceeds benefitting research and awareness for the disease.
"It wasn't just the volleyball team's idea," said Regan McGuire, senior Marcus player and captain. "It was pretty much the whole school. A lot of us had Mr. Hood as a teacher and we wanted to do something nice for him and his family. He has the whole entire school on his side for this."
"Since he is faculty, it goes deep down in our heart," added Kelsee Vandiver, senior and captain. "We really wanted to help out. He's an awesome teacher and we really want to do something for them."
One look at Lydia made the efforts all worth it.
"She is the cutest thing," Vandiver said. "She is just a big ball of energy. She has so many different personalities and you could never tell she has what she has."
"I remember last year, she was so shy and was scared of all of us," McGuire added. "This year, she has been so much fun and she couldn't stay away. It's been great."
Lydia is a student at the Lillie J. Jackson Early Childhood Center in Lewisville where her favorite "subjects" include coloring and playing on the swing and monkey bars. She is also learning Spanish.
Lydia was diagnosed with neurofibromatosis -- which appears in about 1-in-3,500 births -- when she was 9 months old. Fortunately, Lydia has Type I, the lesser of two forms of the disease.
"Our pediatrician caught it about as early as you can," Jesse said. "It started showing up at 6 or 7 months. We noticed little birth marks on her arms and legs and we thought 'No big deal. It's just little birth marks.' So we pointed them out to our pediatrician and that raised a red flag. She got real quiet and started counting them and said this might be something else and not birth marks. She caught as early as she could have and she was awesome about it."
After further testing, Lydia was diagnosed with neurofibromatosis.
"We did more testing and were monitoring the situation and after a couple of months we saw they were growing," Jesse said. "They had increased by 60 percent in one year so it was time for chemo."
While Lydia appears to be doing well now, she had to stop a 15-month stretch of treatments in August after just 12 months following an allergic reaction.
"It just got too bad," Jesse said. "It wasn't a good sign."
On Friday, Lydia was scheduled for another MRI to determine the next step.
"It is two totally different ends of spectrum," Jesse said. "It could be no more chemo, which we are praying for. But if it is bad news, we are going to have to start restart everything. It will be a new chemo drug and she will have to go in weekly for a year. It will make her hair fall out and everything. We're just praying for good news, but either way, we're going to be ready to handle it."
For now, Jesse and his wife are optimistic and thankful for the support they have received.
"This has been awe-inspiring for sure," Dawn said. "We are very grateful for what they are willing to do for Lydia and for our family. The school itself is like family and we are incredibly blessed and grateful."
There has also been a Facebook site started to raise awareness and there will be a Children's Tumor NF Walk Oct. 13 at South Lakes Park in Denton.
"This whole thing got started through my relationships with students and some mothers of past students," Jesse said. "That's what it's all about: the kids. It was completely their idea. They generated the idea and generated the fundraiser and we send this money to research a cure for the disorder because there is no cure. It's about raising awareness.
"It's been incredible what they've done. Last year, I wrote the largest check of my life when we donated the money. It's unbelievable. It's all about the love of this school and this volleyball team and this Marcus family. It's the whole reason for why I teach."
"[Lydia and the volleyball team] haven't hung out much because she had the bad reaction the chemo," Vandiver added. "We're definitely looking forward to trying to do more stuff with her and for her."
To join the Facebook page or for information on the NF walk, go to: facebook.com/lydiasteam.
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