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Jolting With A Mother's Worse Fear

Jolting With A Mother's Worse Fear

I Never Want To Experience Nubian Red's Fear As Rafael's Mom!

It was six years ago Nubian Red life changed. She was impregnated and her focused on each tiny heartbeat and rhythm in her womb from her child later named Rafael.  Most pregnant women expectancy ratio falls in the category of normalcy especially, if the host is following their doctor's regimen, as they all should.  In doing so, NubianRed immediately after delivery of her handsome and energetic boy, when she discovered was something visible abnormal.

 She is a young mother, a musician who ignorantly unfamiliar with the unknown discoveries. Nubian Red was puzzled and seek answers from the medical team on her initial observations .  The baffled doctors concurred and immediately requested labs that focused on the abnormalities in the young Rafael's limb.   The results prompted an island wide attention from various medical professionals.

Nubian Red was totally astonished and through the process of revelation, quickly learned that Rafael had a rare orthopedic condition orthopedic known as Tibial Hemimelia.  

What causes tibial hemimelia? Tibial hemimelia often occurs alongside other birth defects, such as Werner's syndrome, thumb syndrome, CHARGE syndrome and others. The condition can be related to genetic abnormalities that can be passed along from parents to children.

 Although TH can be associated with other conditions, there is no research evidence that statesvit is hereditary or result of other conditions.  The study of TH is quite new and requires extensive genealogical assessment to determine it's infact hereditary.  The rareness of the disease is a chalenge to have an in-depth research but that is changing with the rapid rate of science and technology is moving to address this unique varying physical disabilities.  

Now, how many mothers would be fine with living life with a child forcibly amputating their leg?  I know it would be a difficult burden for many parents; further, Rafael's reality will be a definitely as he grow to understand the rare disease among one-in-a-million birth with the possibility of physical deformity!

The extremety of this rare and chronic disease resulted in amputation on the global scale which is historically documented treatment until doctors start developing new treatment methods.  Through extensive research, a group of doctors were discovered in West Palm Beach Florida who have the experience and technology to perform the tedious surgery that would repair Rafael's leg through an intensive process which will afford Rafael the opportunity to live a normal life "where the impossible is now possible."

The identified specialists have examined Rafael's and the prognosis is good.  Rafael has a mild version of TH so it is treatable for him to have full functionality of his leg without the neec for amputation.  We are desperately seeking sponsors, donations or mathematically speaking, one million people to donate twenty five cents (.25).  Yes! It would cost a whopping $250K USD to save Rafael's leg ( the cost of his surgery, post surgery rehabilitation, housing and transportation) to facilitate the process in South Florida.

The clock is ticking and it is a race against time for five year old Rafael to get this crucial treament to save his leg. 

There is some good and remarkable news: A blind person may have keen hearing or sense of smell and other disabilities increases other sensory functions for adaptation.  However, Rafael have impacted every normal frequencies with an advanced brain power that assess, analyze and critically determine the correct responses at such a young age. 

Rafael and his family needs YOUR help.  All donations will go a far way to nget the life saving and life changing treatment for Rafael.

At this juncture, any donation will be appreciated.  ALL funding goes directly to the hospital.  Donations that exceeding $10K USD or more they can request direct donations info for the hospital by emailing This email address is being protected from spambots. You need JavaScript enabled to view it. and in the subject line "Saving Rafael's Leg -documentation for a wire transfer.  

We have included direct links to various social media outlets including a merchandise casrt that will aid in the monetary contributions

 Please review attachments regarding Rafael's surgery and other any pertinent information.

https://www.gofundme.com/f/savingrafaellegcampaign

https://paleyinstitute.org/blog/conditions/tibial-hemimelia/

https://paleyinstitute.org/

https://paleyinstitute.org/wp-content/uploads/tibial-Hemimelia-Classification-2017.jpg

https://paleyinstitute.org/blog/conditions/tibial-hemimelia/treatment-strategies/

https://helpsaverafael.wixsite.com/website

https://www.instagram.com/rafaelfundraiser/

https://teespring.com/stores/fancytees

 

 

 

 

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