Baby Joshua Naicker (22 months old) from Midrand, Johannesburg, was born at only 33 weeks old with challenging circumstances. The circumference of his head measured 45 cm, a length greater than his body, due to tremendous fluid on his brain.
Proud parents, Phillecia (29) and Bradley (36) were elated to welcome their first born into the world after 5 years of marriage and with uncomplicated family medical history, they could not have anticipated the difficult road ahead.
Baby Joshua was diagnosed with congenital Hydrocephalus, more commonly known as “water on the brain”. This relentless and incurable disease currently affects 1 in every 500 babies globally.
At only 10 days old Baby Joshua had already undergone his first brain surgery and spent the first two months of his life in Neonatal ICU, where he received a number of plasma blood transfusions to compensate for hemorrhaging large amounts of blood. He has since been fitted with a shunt (a thin piece of plastic tubing with a catheter), which drains the fluid from his brain to his stomach
As a result of this rare disease Joshua has developed a number of serious conditions namely Cerebral Palsy (Hemiplegia), severe Cortical Visual Impairment, Hip Dysplasia, Epilepsy, Chiari Malformation, Scoliosis, missing Septum Pellucid, global developmental delay and hypertonia.
“He has had a total of 5 operations in his short existence, 3 of them being brain surgeries, uncountable hours of therapy and doctors appointments. His daily activities are so challenging and he cannot perform any tasks independently such as sitting, standing, crawling, playing, eating or drinking.” says Bradley.
Despite his challenging circumstances, Baby Joshua is described as a bubbly child, who loves affection. “He has the most beautiful smile, a smile that can capture anyone’s heart. He exudes love and happiness. He has the true heart of a warrior.” says Phillecia. “He has come such a long way and is getting very close to sitting and crawling each day. He is beating the odds and with the right treatment and therapy has a chance at developing normally.” adds Bradley.
With unexpected mounting medical costs, Joshua’s parents have appealed to the public for support and set up a campaign on donations-based crowdfunding platform BackaBuddy hopes to fund raise a total of R400,000 for Joshua to undergo Stem Cell Therapy at Duke University in Durham, North Carolina in the USA.
“Stem cell treatment will help him have a better quality of life and we are hoping it will specifically help with his vision, as he is practically blind. Stem cells have the ability to regenerate and repair the damaged brain cells. Duke University has performed thousands of stem cell infusions specifically for children born with this condition. We are hopeful that the procedure will eliminate at least one of Joshua’s conditions” says Bradley
Here’s a breakdown of Joshua’s medical costs:
- The estimated total cost of the first stem cell treatment will be around R344,700 allowing for exchange rate fluctuations or an approximate 10 per cent increase
- Banking and processing the stem cells for infusion: R20,460
- HLA-typing of both siblings to confirm a match: R6,507
- Transporting the stem cells to America: R26,300
- Infusion of stem cells: R216,100
- Transportation and accommodation in America: R44,000
“From the time Joshua was born we have done our best to manage this extremely difficult and expensive situation on our own, but the financial toll on our family has been overwhelming and we need help. We cannot express our gratitude to everyone who has supported out BackaBuddy campaign. Donors have given our boy a chance at a life where he will encounter far less challenges” says Phillecia.
Baby Joshua’s campaign has thus far raised R45,498 towards his fundraising goal of R400,000 with contributions from 64 donors, so he needs your help! Click here to donate towards his campaign on Backabuddy.
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