Nevaeh O'Dea-Hurley

Age: 2.5
Cognitive Age: 18 months
Therapies: Physical, occupational and speech therapies

Schooling: N/A
Siblings: Nevaeh has an older half-sister, Skye (4), an older half-brother, Jayden (3), and a younger half-brother, Hunter (3 months) 
Parents: Tiffany Hurley

Kabuki Symptoms: Low birth weight, low blood sugar at birth, feeding difficulty at birth (resolved), left eye turns, speech difficulty, small stature, horseshoe kidney

 

Nevaeh's Story: Tiffany’s pregnancy with Nevaeh was relatively uneventful. She had some episodes of blacking out when she was about 4 months along, but otherwise everything seemed normal. Before Nevaeh was born, Tiffany only had a son. She went through the majority of her pregnancy not knowing the gender of her baby, but finally, two weeks before she was due, she learned she was having a girl! She was beyond excited to complete her family with one child of each gender.

 

Unfortunately, at this same appointment she also received some bad news. Nevaeh’s stomach wasn’t growing properly and the doctors wanted her delivered that day. Tiffany was full of mixed emotions! Happy and excited that she would get to meet her baby girl a little bit early, but also scared and heartbroken that she couldn’t do anything to help her baby.

 

Shortly Nevaeh was born, Tiffany was feeding her and she turned blue. She wasn’t breaking. Doctors put her on oxygen to bring her back and discovered that her sugar was low. She couldn’t get them back to normal because she was unable to feed properly, so an NG tube was placed. Nevaeh was placed in the NICU and hooked up to IVs and monitors for several weeks. She was given medication to help with her sugar regulation.

 

With each day that passed, it was harder and harder for Tiffany to go into the NICU. She felt as if Nevaeh would never get to come home. But by the 5th week, things started to look up. Nevaeh was learning to suck, but was still losing a lot of milk around her mouth so she needed topped off through the NG tube. By week 6, her weight was back up over her birth weight and she was gaining at a steady rate so Nevaeh was discharged to go home.

 

Three months after discharge, Nevaeh was admitted back to the hospital because she started losing weight again. Genetics was brought in and the results showed that Nevaeh has the KMT2D mutation resulting in Kabuki syndrome.  She was able to come home after that and hasn’t been back since! At one of her appointments when she was 11 months old, it was discovered that she has a horseshoe kidney. Her kidney function looks good, though, so they monitor it once a year to make sure her function remains stable.

 

Nevaeh learned to walk in the last year and is now running and climbing wherever she can! She only speaks about a dozen words, but she’s making progress and following her own little curve in life. She wears glasses and attends her therapy appointments on a regular basis. She’s a happy little girl who adores her brother Jayden and loves to play with him!

Nevaeh’s Favorites: "Some of Nevaeh's favorite things to do is play with her blocks and chase her brother around. Nevaeh also loves to sleep. Nevaeh loves to be outside but has a bit of anxiety when it comes to being in the grass or water. We are still working with her to ensure her that she is safe and that she is able to enjoy these things."

Nevaeh's Relationship with her siblings: "Nevaeh only lives with Jayden, they get along fairly well. Nevaeh loves to play with Jayden and he loves to make her laugh."

Advice for Kabuki families: "Being such a new parent to a child with Kabuki and not having a whole lot of information on it, the only thing I can say is to just breathe when things get tough. You are your child's rock and they will need you more than you can ever imagine."

Advice for parents of “typical” children: "Raising a child with Kabuki has its ups and downs. I have one child on each side of the spectrum, a Kabuki child and a typical child. my KK has needed me a lot more then my typical child has or does, but I still find a way to level out my time spent with each one so I ensure them both that they are loved equally. Your KK will always need a bit more from you and its totally fine that you give it to them. it doesn't make you any less of a parent to any other child."

How Nevaeh has impacted the family: "Having a child with such a rare syndrome from where I'm from is a whole new learning experience. Sometimes it takes a toll on you, not knowing what you can do to help your child achieve the most from every day. All I can do is take it day by day and stay close with the support system and doctors as we are all learning from this rare syndrome. Luckily Nevaeh doesn't have a lot of medical issues so it relieves a lot of stress that I know a lot of other parents have."

Nevaeh is a happy, adorable little girl whose journey is just beginning. She’s behind, like many Kabuki kids, but hitting milestones at her own pace and working hard to keep up with her brother!

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All Things Kabuki (ATK) is a registered 501(c)3 non-profit corporation based out of Wasilla, Alaska. We are the only U.S. patient advocacy group supporting the Kabuki community globally. Our mission is to raise awareness, incite research, and support individuals and families affected by Kabuki Syndrome.
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