Hope for Daniel whose sight has deteriorated rapidly

LOUISE WALSH

An American genetic research institute has undertaken to try and help a young boy with autism whose sight has deteriorated rapidly since he stole the hearts of the nation last year.

Kind-hearted donors nationwide gave over €30,000 to help little Daniel Haslam realise his bucket-list after he was given just six years before he went completely blind.


However that time-frame has been reduced rapidly and Daniel’s is now blind in one eye and almost blind in the other.
The nine-year old who suffers from optical atrophy is learning braille and can only do his homework on a computer with a huge font of 72.


Daniel also has autism and a rare form of hearing loss but genetic tests here for Wolfram Syndrome and other genetic diseases have been returned clear.
However the Discover Programme in New York has now undertaken to try and solve the mystery of why Daniel is going blind.
The programme is the only such centre of its kind in New York state and aims to provide an answer to undiagnosed significant medical conditions to patients worldwide, through genetic sequencing.

-aniel’s eyesight has deteriorated but the Discover Programme in New York has signalled new hope.

His mum Carol is now hopeful that once a genetic condition is discovered, the fast deterioration of her son’s sight might be halted.
“We received the all-clear from genetic tests in Ireland in January but a separate team of doctors for Daniel’s eyes believe he may have a condition that has not yet been discovered.
“Initially it was thought Daniel may have Wolfram Disease because he had three of the five symptoms with the autism and his hearing and sight loss but that isn’t the case.
“We just want to have an idea of what to expect down the line. At the minute Daniel is blind in one eye and not far off it in the other. He can only see something when he is two foot away from it now and his night vision is completely gone.
“His sight loss has been quite dramatic since first diagnosed but Daniel is amazing. He just goes with it and is ok.”
Carol’s determination to help her son every way possible has led to the New York intervention.
“I just came across them on the internet and finally got talking to a geneticist who is pretty sure from our conversation that Daniel does suffer from a genetic condition.
“I’m in the process of getting his files sent over and then we will have a Skype consultation which costs €750.”
Carol still has money from all the donations, which will go towards the cost of the research.
“Obviously if it costs tens of thousands, we can’t do it but if it is a new condition, the Discover Programme will get grants to probe it further. Daniel’s condition is brain-based. His eyes and ears are perfect but it’s how the information is processed to the brain that is being damaged somehow.
“The optic nerve from the eye to the brain is dying and we were told Daniel may have up to six years of vision left but this has been dramatically reduced.”
Carol and her husband Kevin from Ratoath were stunned by the outpouring of generosity last year when they appealed for help in showing Daniel the world before he went blind.


The couple had hoped to raise €3,000 but donations amassed to €30,000 which has been used to date to how Daniel sights such as the Great Wall of China and the Tower of London as well as his beloved Thomas the Tank land in England and Disneyworld in Orlando.

One of Daniel's dreams was to see the Great Wall of China

During the Easter break, the family are due to travel to the US to see Alcatraz, the Hollywood sign and Vegas and European cities such as Paris and Pisa are planned for the summer.
“Daniel is mad into Geography and wants to see physical structures like the Eiffel Tower, Big Ben, the Leaning Tower of Pisa, places like that.”
People’s goodness have made us so humbled and we can never thank them enough. Hopefully their donations will also now help us to give Daniel’s condition a name and maybe even a treatment,” she concluded.