Miracles4MeilaandMarlee

Hi, my name is Taylar and I am fundraising for my dear friend Lashay, her partner Melvin, and their girls Meila and Marlee.

First off I would like to say thank you for visiting Miracles4MeilaandMarlee’s fund. We truly appreciate you for reading and sharing our story.

Lashay’s story in her own words.

On September 27, 2020 Melvin and I welcomed our lovely 8lb 14oz baby girl into the world

Meila Arteaus Plowden brought so much peace and tranquility to our family and home during turbulent and difficult times. Meila would develop and reach her milestones while living a happy, healthy life. When she was about 7 months old, other family members noticed Meila physically exhibiting indicators of developmental delay. My mom would say things like "Shay, you need to get her checked out; something isn’t right". Instead of realizing that there was a problem, however, we assumed that because we constantly held her and gave her whatever we believed she wanted, she was "spoiled," and that perhaps she just wasn't ready to do some things.

Closer to her first birthday, while in her care, her grandma Audrey called us worried and asked if we had gotten Meila checked out because she wasn't acting like a typical child her age.

She then inquired about taking Meila to the Children's National Hospital. Meila received a diagnosis of Mucopolysaccharidosis and was hospitalized during what we assumed would be a quick visit. In a very short amount of time after her hospital stay, Meila started to exhibit indicators of gradually regressing in her ability to use her gross motor skills.

Our innocent, sweet girl, who had once been able to crawl, was stripped of that ability. She never got the chance to walk; she could no longer sit up straight and would lie down on the bed and become stuck, unable to get herself up. She was no longer able to babble or say "Mama" or "Dada", she even had to return to eating basic baby foods and pureed meals because eating had become difficult for her. Meila had her first seizure at age 1 that had been triggered by a fever. During a several week hospital stay, being extensively monitored, being introduced to numerous different types of doctors and nurses, getting a cat scan, x-rays, and having an EEG, Melvin and I were told she had GM1 Gangliosidosis.

What is GM1 Gangliosidosis?

GM1 Gangliosidosis is a rare genetic disorder that progressively destroys nerve cells in the brain and spinal cord. Children with GM1 gangliosidosis type I experience seizures, substantial intellectual incapacity, skeletal deformities, enlargement of the liver and spleen, paralysis, clouding of the clear outer layer of the eye, and other symptoms as the disease worsens. Including but not limited to early death. Why does GM1 gangliosidosis occur? A GLB1 gene mutation that results in a deficit in the enzyme beta-galactosidase-1, which lysosomes need to properly break down big sugar molecules inside of body cells, causes GM1 gangliosidosis. Unfortunately, there is no cure for it, and it's documented that affected children do not survive past the age of two.

We were told that our baby had epilepsy and that from the activity obtained from the EEG monitor, there were traces of ongoing seizures, and she was prescribed Levetiracetam, also known as "Keppra," to help decrease the number of seizures she’d have. While taking the medicine, we began to notice a shift in Meila's sleeping pattern. She would sleep all day and be awake from 11pm-9am. Also, her seizures became very aggressive, whereas her arms and legs would stiffly go up and her face would become very tight. We chose to discontinue using Keppra since it was upsetting for us to witness our baby go through such terrifying bouts. We observed that once the medication left her system, her sleeping patterns returned to normal and her seizures became more appropriately timed.

On November 7, 2021, Melvin and I had our second child, a daughter we named Marlee Rebecca Plowden. She was born with clubfoot, a group of foot abnormalities in which the foot is turned inward, and was also diagnosed with GM1 within 2–3 months after birth. Marlee hasn't yet shown any signs of regression, although she is imitating the same actions Meila took when she was younger.

Meila has since been admitted to Children's Hospital Center three other times and was tried on another medication called Topiramate also known as "Topamax". It produced the same outcomes and received the same response from us. We were told by the physician that we could choose not to take seizure medications until we felt confident enough to try something else. Meila has since become 100% dependent on us. She does not talk, walk, hold her cup, stand, or do anything a 2-year-old does. She uses a NG tube, for which was provided to us 3 tubes, several feeding bags, and 3 cases of Pediasure for 3 months and then stopped. Meila receives services from Capital Caring Kids as well as occupational therapy from Strong Start. We are currently looking for assistance in every way possible.

How this fund helps our girls.

Since she is a growing girl, picking her up while carrying her around is backbreaking. We need equipment like a bath chair (because bath time is no longer enjoyable), a feeding chair, and if possible, an everyday chair that can sit her up as comfortably as she can be while helping her hold her head up as we move her around. We struggle to get her and her sister to their appointments because we no longer have a car. As for Marlee, we’re awaiting a surgery date to correct her clubfoot, and hopefully we’ll be able to prolong the regression of her abilities based on the knowledge and awareness we’ve received from Meila.

I can't possibly list every difficulty we've encountered as parents of kids with this condition, I'll just say it’s EXTREMELY HARD. Mentally, physically, and emotionally. I'm a 32-year-old mother of four girls. I don’t play; I work four days a week, sometimes more, just so we’re able to provide for our children. Dad provides a ton of assistance by staying at home with our kids (it works for us), since we don't feel safe leaving them in a typical daycare facility. I'm truly worried about missing out on so much of what happens with them throughout the day because of work. Two days ago, I witnessed Meila have the longest seizure I've ever seen her have since having them, and I must say it hurt my feelings. Blake, my 7-year-old, said a prayer, and it went like "God, please stop my sister from having seizures.", And when she was done, she asked Meila, "Meme, are they gone?” No doubt about it, this is about Meila and Marlee, but I must share with you guys how awesome and what a big help Blake is. With so much focus having to be put on Meila and Marlee, often overlook the innocence of Blake and her needs as a young girl who still loves to go outside and have fun. Along with Makhi, their older sister, who doesn't see them as much because she lives away from our home.

Miracles for Melia and Marlee is an attempt to seek help and support to lessen some of the financial difficulties that come along with such a life changing condition and so that we can create as many memories as we can for our family. We are aware that we are not the only ones experiencing financial difficulties, and we are appreciative of any assistance that anyone can offer at this time.

For more information on GM1-gangliosidosis please visit:

www.curegm1.org

http://medlineplus.gov/genetics/condition/gm1-gangliosidosis/