A YOUNG boy who could die from the common cold says he wants to raise awareness of his rare condition to “save” other babies who may remain undiagnosed.
All brave Nathan Ward wants is to be able to play with his friends but, because his body can’t produce antibodies, any infection he picks up could kill him.
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The nine-year-old from Navan, Co Meath suffers from a primary immune deficiency disorder called hypogammaglobulinemia which requires regular transfusions of antibodies and constant courses of antibiotics.
Nathan is in third class at St Anne’s NS but he has to stay at home during winter and any time there are prevalent illnesses in the school.
His parents Amanda and Ray even kept him at home last year to make sure he didn’t pick up an infection before making his First Holy Communion.
His parents and older sister Megan have now started fundraising for up to €80,000 needed to bring Nathan to Boston for stem cell treatment, which will mean he can live a normal transfusion free life for at least eight years.
Mum Amanda said: “Nathan was diagnosed only two years ago with the condition, which we are told affects one in one million people.
“Even as a baby we were constantly going to the doctors with chest and throat infections but as he has aged, he has more scar tissue now in his lungs so the risks to his health are even higher.
“Last year he got the flu and he couldn’t breathe because his windpipe was closing. Thankfully the ambulance arrived quickly and the paramedics saved his life. We almost lost him.”
She continued: “Nathan is our miracle baby. We lost our three month old baby boy Jay to a heart condition in 2013 and I then suffered nine miscarriages and lost an ovary due to cancer. He is our golden child and we can’t lose him.
“Ray and I are watching his every move and we are on constant alert. We even have cameras in his room.
“We want him to have a normal life and play with his friends at school but we are very mindful that he could be one infection away from death so we need to get him this treatment.
“This treatment would mean everything. Nathan could be the little boy he just wants to be.
“He loves to dance and he loves motorbikes like his mam and dad, and he says to me that he wants to help save other babies who may not realise they have the same condition, through raising awareness of it.”
What is hypogammaglobulinemia?
Hypogammaglobulinemia describes low levels of immunoglobulins in your body.
Immunoglobulins are antibodies that fight germs like viruses and bacteria that can make you sick.
Having low levels may increase your risk of infections and other diseases.
According to Cleveland Clinic, antibiotics, immunoglobulin replacement therapy and stem cell transplant are “potential treatments”.
The most common sign of hypogammaglobulinemia in children and adults is long-lasting or frequent infections but symptoms depend on the type of infection.
Common infections associated with hypogammaglobulinemia – and commonly associated symptoms – include ear infections, sinus infections, bronchitis, pneumonia, meningitis, skin infections and a stomach flu.
This Sunday, South Dublin bikers are staging a rideout from the Maxol Garage on Dublin’s LongMile Road at 10am to Navan where they will get a garda escort to Nathan’s house.
Biker Lee Moran said: “To some it be may be nothing, to us this hits home.
“We, South Dublin Bikers, came across Nathan in Navan after our Belgard meet who has a loving for motorbikes.
“We as a group decided we will jump on board and help get this little warrior to Boston for some life-saving treatment.
“Anyone who wants to join in on Sunday can get more information from the South Dublin Bikes Facebook page.”
Any one who would like to help Nathan get to the US for treatment can donate on GoFundMe under ‘Nathan’s Road to Boston‘.
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