Manny Super Fight NF1 and Glioma Awareness
(PRUnderground) February 17th, 2021
On 01/27/2021 Mykeah started a Go Fund Me. You can read & learn more about the Charitable & Goodwill efforts close to Mykeah’s heart on her website mykeah.com as well as educational information on the causes.
“I know this is a rare disease, it just doesn’t make sense why there isn’t much we can do I feel at a loss of words as to why I can’t do more to help. There are no answers, no cures for this we need more research we need more answers, together we can make a difference!” Mykeah’s passionate statement. A donation link to help is listed below. Mykeah stated proceeds from her song “New Mess” will go to finding these answers “New Mess” official video is on youtube.
“Manny is his family funny, Toy Story 4, superhero crazed, a boy who, in 2019 at 13 years of age, was diagnosed with a brain tumor, a cancerous glioma. According to https://dana.org/article/gliomas-the-latest-research/ “In spite of these advances, malignant gliomas still are dangerous tumors and most patients will not survive them beyond a few years. Benign gliomas slowly grow, producing disabilities, and eventually are also fatal. Surgery might extend survival 9 or 10 months”. His uncle died I believe in his early 20’s from complications from the same condition. Manny’s condition has gotten more critical as we are going through chemotherapy that started on October 19th, 2019. With back and forth trips to the hospital we have taken a toll as a family. He was diagnosed with neurofibromatosis before coming into our care but due to medical neglect, it wasn’t treated in a timely manner resulting in more major health problems. Such as Dysphagia, Epigastric Pain, myopia, anisometropia, acute anterior uveitis, mild scoliosis, mild varus left leg and LLD, Advance bone age, pain in both legs, heart murmur, lisch nodules, band keratopathy, and more that he is being followed for.
Manny and his three female siblings ages, 9, 12, and 15 who also have nf1 and have special needs as well. Department of Social Services told us to get court documents stating some type of guardianship/custody so that they can get enrolled in school in which was an incorrect thing to do which has resulted in them not funding the children staying in our care but treating the situation as if they are in foster care. Family partnership meetings, CPS visits, and the ultimate goal to safely reunite them with their families as soon as possible are what is happening. In saying that we have lots of expenses that we incurred from clothes, shoes, bedroom furniture, glasses, increased in the rent to move to make room for them as well as increased bills electric, water, sewer, cable, etc. not to mention babysitter for doctor visits for other siblings, and court dates. Property damage due to behavioral issues. Both of his parents are not in his life they will not get the blood tests needed for the genetic testing or for compatibility. The lack of participation in the children’s life has made this more complicated and critical in finding a solution in the fight for Manny’s life.
Because of lots of doctor appointments some meals needed to be purchased out and gas for the trips as well. It would be nice if Manny would be able to ride a bike since he was never given the opportunity to do so. He would need a special bike adult-size tricycle with a seat belt low to the ground. Household cleaning supplies also gloves and masks is a hefty part of our daily spending due to the immunity compromise of Manny. Birthdays are back to back July, August, September, and October for each of the children. They would like to do extra activities but funding doesn’t allow for this. We took the four children into our full care in August of 2019. Recent foster college and classes have us approved through PRIDE in Virginia which the Stafford county says they can not accept the certificate through Fredericksburg certification we were told it is accepted throughout the state of Virginia. We were also told by the head of Stafford foster care to “Flip that Medicaid card over call those numbers on the back use them that’s all you would get anyway if the children came into care through us”.
This journey has impacted Manny and our family so much, taking a tremendous toll on both Manny’s physical and mental wellbeing. Your support is urgent and will be forever appreciated and if you can share this campaign with your friends, family, and colleagues, we would be very grateful. Please keep Manny in your prayers, stay blessed!
02/08/2021 Update: Manny received an MRI of his brain to see how the brain tumor is responding to the chemotherapy. He wasn’t too thrilled about it but he knows he has a super fight. We are hoping and praying that the treatment is working. We will let you know the results as soon as we get them please keep Manny in your prayers let’s beat this! We thank you for all your support!” – Cited from https://www.gofundme.com/f/mannysuperfight
To help this cause donate here: https://www.gofundme.com/f/mannysuperfight
Watch to help: https://www.youtube.com/watch?v=HWPVilwvjBg
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Original Press Release.