Sonny Hodson is two years old.
He can’t walk and he can’t talk.
But he is loved. To the moon and back.
When Sonny was 18 months old, his parents Mitchell and Sarah Hodson were astonished when genetic testing diagnosed him with Pitt Hopkins Syndrome, a rare genetic disorder with around only 500 cases worldwide.
The condition means Sonny will experience developmental delays, possible breathing problems, hyperventilation, gastrointestinal problems, seizures, lack of speech, impaired mobility and distinctive facial features.
But there is hope.
“We found the Neurological and Physical Abilitation (NAPA) Centre in Sydney and three weeks of therapy there, four hours a day, is equivalent to a whole year of traditional therapy,” Sarah said.
“The only trouble is it costs $10,500 for 60 hours, and it’s in Sydney.”
The couple took Sonny for his first round of therapy earlier this year and the results were positive.
“Sonny has made massive strides in his development, even taking his first steps which was massive,” she said.
The only problem is, Sonny will require the therapy three times per year – until adulthood.
“The only trouble is it costs $10,500 for 60 hours, and it’s in Sydney.”
The couple’s local pub, the Royal Crown at Dudley heard about Sonny and the Hodson family and wanted to help.
On Saturday, 7 April the hotel is hosting a fundraiser for the family with the aim of helping raise some of the money for Sonny’s next round of therapy.
“We bought this hotel about a year ago,” Royal Crown co-owner Ethan Ortlipp said.
“And since then we have been heavily community focused. It was a big reason of why we wanted to go into pubs, and we have that personal connection with the family.
“We’ve found here that community engagement is huge and we haven’t said no to anyone who has asked for support, from charities to sporting groups. We’ve supported our community to the tune of about $60,000 in the past year, but this is probably the biggest fundraising event we’ve seen so far.”
Royal Crown Hotel owners Ethan Ortlipp and Travis Hargreaves (each end), Sonny with his parents Mitchell and Sarah Hodson (middle).
To support Sonny’s Fundraiser or make a donation please contact Elliot Poganoski at the Royal Crown Hotel, Dudley on (02) 4944 7698.
Learn more about Sonny here: