Ruby Styling!

Our daughter Ruby was diagnosed with Zellweger’s Spectrum Disorder in November. We had always known she likely suffered from some form of genetic disorder but were told we would probably never get a diagnosis. Furthermore, we were informed that a diagnosis likely wouldn’t change much for her as she was already receiving all the requisite care. While continuing to push for more testing, what we had not prepared ourselves for was an incredibly rare diagnosis that would shorten her life expectancy greatly. Most kiddo’s with this disorder don’t make it past 1 year of life, so in a sense, we do consider ourselves lucky as Ruby has just surpassed 4 years this past June! Over the past year, we have been forced to pivot from making Ruby “better” and focus on her quality of life and comfort. Today, Ruby relies upon a G-Tube for feeding, a Tracheostomy + oxygen, and is completely immobile. With Ruby spending all of her time in a wheelchair or bed, we are trying to find ways to reduce pressure on