BoominBoss : Nylah Rose

Thanks to all who voted for Nylah. Voting is now over!

Hey Bosses! Now when I say boss, I’m not talking to just business owners. I’m talking to bosses of every aspect of life. So with that being said, I would like to dedicate my first Boomin’ Boss feature to my lovely daughter Nylah Rose.

Nylah Rose is a CMT warrior. CMT, Charcot Marie Tooth, is a degenerative genetic condition that affect the nerves in your hands, feet, arms, and legs. There is currently no cure for CMT. There are several variants of the disorder. Nylah have a less common/rare subtype: infantile onset CMT2D. I have only come across 2 kids with Nylah's condition online and none in person.

Nylah was first hospitalized at 2months for digestive issues which soon led to breathing difficulties. She was intubated and remained hospitalized in ICU for 3-4 months undergoing lots of testing & procedures. After 4 failed extubations , we made the difficult decision to get a tracheostomy & gtube so that we could bring her home and live a life outside of hospital walls.

Since coming home, Nylah has made much progress. She receives plenty of therapy to battle her immobility & speech development. She’s now utilizing an eyegaze communication tablet to combat the language barrier. Nylah weekly schedule is full of appointments aiming to optimize her abilities.

I strive to make anything possible for her. As her mom, i vow to give her a life of a child: Not one of a patient. Despite her physical disabilities and heavy diagnosis , Nylah lives a life of fun. She’s always tackling a new adventure such as catching flights or road trips to the beach. I aim to show her the world even with a ventilator & several other medical devices in tow. Nylah also enjoys car rides, pony rides, swimming, jump parks, and strolls outside. She is definitely a music lover. She sings & dance as much as her little body allow her to.

Nylah still carry many scars of her journey, both physically and mentally. However, her spirit grows bright & strong the older she gets. Nylah is now 4 years old with such a charismatic personality . She is fierce. She is sassy. She is beautiful. She is unique. She is intelligent. She is strong. She is a warrior. She is my inspiration. She is a boss! Thank you for tuning in to learn about Ms. Nylah Rose. You can stay updated on Nylah’s progress on FB by searching the hashtag #NylahStrong or following her FB page NylahStrong or IG(@Nylah.Strong).

#nylahStrong #cmt #cmta #cmt2d #trachlife #tracheostomy #gtubecutie #gtube