submitted by Sharon Bak
A group of friends have launched a fundraising campaign to assist a family in need. Peter-Justin (age 21) and Avery (age 19) Navratil suffer from a rare life threatening genetic condition known as Xeroderma Pigmentosum (XP), which occurs in only an estimated 1 in 1 million people. The fact that two siblings have this condition in makes it an exceptionally rare case. XP is characterized by an extreme sensitivity to ultraviolet light as well as developmental delays, neurological impairments, and cancer. Regardless of medical interventions and technology, they will both succumb to this disease and pass away at a young age.
Through the diligence of their mother Earla who is a native of Sault St. Marie, the children have remained cancer free, however the family was devastated to learn several years ago that the classification of XP for Peter-Justin and Avery is Class D. This means they that will suffer from brain and muscle atrophy and eventually become bed ridden, unable to speak or eat, before passing away.
The home is now in desperate need of work to make it fully accessible to accommodate for the declining physical health of the children, which is declining significantly and rapidly. It is imperative that these renovations take place as soon as possible so the family can have the safety and security to enjoy Avery and Peter-Justin’s remaining years with joy and love, not stress and anxiety. Considerable work has been done in the past to make it safe from UV light but also created enormous financial strain. The group of friends, known as a Wrap Around Group, has launched a financial appeal to support the family in making these much needed renovations and improve their quality of life.
“The reality of life for this family is that their home is the only truly safe place they have”, says Sharon Bak, a spokesperson for the group. “We know how generous this community is and our hope is that this campaign will not only provide the financial support that is needed to make the home fully accessible, but also raise awareness of rare genetic conditions like XP that cause so much heartache for families like the Navratil’s.” This group of friends and supporters also includes Thunder Bay/Superior North MPP Michael Gravelle who has been working to advocate and obtain additional support to meet the family’s unique needs.
On top of the challenges faced by XP, Earla is a single mother who works full time and has survived breast cancer and a brain tumor. Her oldest son Joesph has thrived in life even as he lives with Aspergers Syndrome, a form of Autism. The challenges for this family, both mentally and financially, are enormous and time is of the essence to create the safe and secure environment Avery and Peter-Justin need for their remaining years.
Please see the link below for more information on the family’s story and the group’s fundraising efforts.