By Dan Howlett @DanHowlett85
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Videographer / director: Ruaridh Connellan
Producer: Dan Howlett, Nick Johnson
Editor: Jack Stevens
Lisa Koltay, 48, from Florida, is being joined in her fundraising efforts by teenage son Daryle, 19 - who has dedicated his life to aiding others with his condition.
The pair are raising money to send vital supplies to women and children in South America who are suffering from the impact of the devastating virus - which is transmitted by mosquito bite.
He said: “We make boxes of essentials to send to kids as they need them. Growing up with microcephaly is hard and it doesn’t get better when you get older, it gets worse and worse.
“We are looking for sponsorship so he can send more diapers, baby wipes, bug repellant and anything else which can help expectant mothers combat Zika."
Microcephaly is a condition in which children are born with abnormally small heads, often as a result of stunted brain development.
The reason for Daryle’s microcephaly remains a mystery but Lisa, whose two other children, Barry Wilson, 29, and Shawna Mortham, 25, were born without medical problems, believes that Zika could have played a part – despite the fact that she never left her native Florida while pregnant.
“My pregnancy was full term and felt normal but I got bitten by mosquitos a number of times,” she said.
“I did develop a rash on top of my feet and I felt ill.
“There are suspicions that it was Zika virus but it’s still a complete mystery what caused this condition in Daryle.
“I only knew something was wrong when the pediatrician told me about microcephaly – they said he could possibly become blind, deaf and potentially paralysed.
“I was devastated – I didn’t know what to think or say.”
The latest outbreak of Zika virus began in Brazil in April 2015 and it has since been linked to a huge rise in the number of babies being born with microcephaly.
Current World Health Organisation guidelines point to "an increasing body of evidence about the link between Zika virus and microcephaly” but stress that more investigation is needed to better understand the relationship between the two.
Daryle has a mental age of seven and cannot express emotions but Lisa insists he is living a fulfilling life by trying to help the thousands of babies affected by microcephaly in Brazil.
She said: “He has ambitions just like anybody else and wants a purpose in life – I believe this is his purpose.”
When Daryle was younger, Lisa even cut her son's hair in a specific shape to make his head look bigger.
She added: “I give him a mushroom haircut to add volume to his head so that people don’t stare at him all the time.
“The hardest part is trying to educate people and get them to realise that they shouldn’t make fun of him.”
Daryle had a head circumference of just 12 inches when he was born in 1997 but Lisa refused plastic surgery to widen his skull.
“I just couldn’t stop crying but I knew this was how he was supposed to be,” she added.
“I was told to watch out for things like vomiting, passing out, seizures and to make sure his brain was not growing and putting pressure on his skull.”
Daryle, who graduated from Pinellas Park High School in May 2015 with a special diploma, cannot read or write and often has trouble expressing himself and displaying emotion.
He cannot dress himself and struggles with balance and disorientation daily, requiring 24-hour care from his mother.
However, he is now hoping to pack and send supplies of nappies, vitamins and medication to needy babies in Zika-hit communities like Recife, north-east Brazil.
Lisa added: “He’s a true fighter and a tough cookie. I’m extremely proud of him – he has come a long way.
“My advice to the mothers over in Brazil is to develop a support system as it’s so important.
“There’ll be days when you’re tired and you just say to yourself how am I going to get through this.
“But a lot can be achieved and even if you have days like this you should never give up on your child.”
The World Health Organisation has declared Zika virus a public health emergency.
Pregnant women and those who are planning to become pregnant have been advised to postpone all non-essential travel to affected countries.
Medical experts have warned that people who are planning to travel to Brazil for this year’s Olympic Games should contact their GP before travel.