A mother from the West Midlands has described the “huge impact” of losing respite care for her young daughter, who has complex special needs.
Stephanie Galway looks after her seven-year-old daughter Amaya at home in Solihull. Amaya has been diagnosed with bulbar palsy and a floppy oropharynx, however, the government has not included those suffering from conditions like hers on its list of vulnerable people.
The National Insitute of Neurological Disorders and Stroke defines Progressive Bulbar Palsy as a condition that attacks the lower motor neurons connected to the brain stem, which controls the muscles needed for swallowing, speaking, chewing, and other functions.
Stephanie explained, “Amaya is unable to go out due to being high risk. Her bulbar palsy puts her in a life-threatening position.
If she does get coronavirus, Amaya will be alone in the hospital where she needs 24/7 care and I don’t think she will get that. Like most parents with complexed medical needs, we live in fear daily but at this moment we just don’t know if we will escape the virus or not”
The MND Association (Motor Neurone Disease Association) issued a public statement saying: “We are extremely concerned to see that people with MND have not been included in the Government’s list of extremely vulnerable persons in their guidance on shielding and protecting vulnerable persons from COVID-19. However, people living with MND can self-register as extremely vulnerable.”
Parents like Stephanie have spent years building up a package of care to ensure their child can live the best life they can, but all this has ended with the coronavirus pandemic.
The family previously had access to respite through a scheme introduced by Solihull Council. The scheme, which was through SEND (Special Educational Needs and Disability), offered days out which have had to be cancelled due to the pandemic. That’s left Stephanie caring for Amaya 24 hours a day, seven days a week, without a break.
Stephanie told Birmingham Eastside: “I suffer from anxiety due to nearly losing her 2 years ago from her airway collapsing.
Now my stress has heightened due to having to watch her almost every minute of the day.”
Contact, the charity for families with disabled children, is offering links to all the latest government advice for anyone with a vulnerable child. It’s continuing to update the page as and when the situation changes.
Midlands charity, Scope, is also offering parents advice and support via their website: https://www.scope.org.uk