Sask. family struggles to bring daughter with rare condition home from hospital due to lack of rural medical supports – CTV
Aug. 26, 2022
A Saskatchewan family is highlighting the need for more medical supports in rural communities after they say they could be forced to relocate in order to seek treatment for their daughter.
Grace Hordos was born with a rare genetic condition called Type IV Klippel-Feil syndrome, which affects the bones and muscles in her body.
“There are only 14 others that we are aware of worldwide that have this type of Klippel-Feil and it is the most severe,” Grace’s mom, Amanda Hordos said.
At just eight months old, Grace has been staying at the Jim Pattison Children’s Hospital (JPCH) in Saskatoon for most of her life, after being admitted in February. As a result of her condition, Grace relies on a tracheostomy, a feeding tube and for most of her time at the JPCH she’s been hooked up to a ventilator.
“Because of where we live, we cannot take her home on a ventilator, because we don’t have access to a respiratory therapist,” Amanda said.
