Please help Adalyn's family with medical costs

Please help this exceptional, loving, community-giving Saltspring family in need of financial support. Adalyn is 12 years old, turning 13 on May 19th. She was taken via emergency helicopter to the BC Children's Hospital Epilepsy Monitoring Unit because her seizures have become constant. She has a rare form of epilepsy that has taken 12 years to properly diagnose, which was entirely dependent on the family's constant advocacy. Adalyn is surrounded by a deeply connected family, who have been by her side through these many years of struggle, while doctors and specialists tried to understand what was going on.

Tanya, Andy, and her older sister, Arawyn, are stoic, hard working, positive people with tremendous grit. They are known for helping others in times of need, even when their own family has many moving parts and personal struggles along this journey to help diagnose and treat Adalyn's dangerous, scary, unpredictable genetic condition that is constantly disrupting her childhood. The costs of caring for Adalyn are significant as she currently needs 24 hour care. The costs are growing by the day, as Tanya has had to take many trips off island to see many specialists, and is now needing to be at Children's Hospital with Adalyn. All this has meant Tanya has had to take time off work. Andy works tirelessly to support his family, stepping in to many care-giving roles 24 hours a day. They need to pay for accommodations, meals on the road, and of course the family on Saltspring still has the costs of rent, food, and life. The timeline is open ended and Adalyn's symptoms just keep getting worse. They have never asked for help and have been accruing debt throughout the years due to Adalyn's unpredictable medical needs. At times, Adalyn has not been able to attend school full time, which has meant a disruption in work while having increased costs for living. Tanya volunteers for community organisations and is a powerhouse when it comes to creating fundraisers for non profit groups and people in need. Arawyn, Adalyn's older sister, has never known anything other than being a strong, supportive ally, and both their childhoods have been radically different than their peers. They are both athletes and work hard at school. They don't complain, and the whole family are strong contributors to our community despite the years of isolated struggle. This family does not need the added hardship of intense financial stress as they embark on this pivotal time in Adalyn's medical journey, and I am asking the community to step in to help by giving whatever you can afford at this time. Any and all contributions help.

To know more about what the epilepsy condition is that Adalyn has, I have copied a portion of the article written by Tina Simpson from the journal Medium, that details this family's journey. For the full article, please click on the link at the end.

"Adalyn has a rare epilepsy: PCDH19 Clustering epilepsy. It is a rare form of epilepsy that presents prior to 3 years of age. It results from a disruption in the way the DNA communicates, which plays a primary role in growth and development. The variant changes the way the brain transports messages, much like if you switched the letters in this paragraph around randomly in a way that didn’t make sense.

When that miscommunication happens in the brain, a seizure occurs.

Adalyn was first hospitalized for a week when she was 10 months old. She just got really sick and we never knew what the reason was. She recovered, and then started having [what we recognised as] seizures when she was about 5 years old. From this point on, seizures started becoming part of life.

She has always had a strange medical history. When she gets sick, she has more seizures. She has always struggled with gastro-intestinal issues and recurring UTI/kidney infections. She’s often experiencing odd symptoms, both physically and neurologically — I literally never know what to expect.

As she is entering puberty, we are now going through an increase in episodes, sometimes up to a dozen a day. They are starting to last longer (up to 7 minutes) and are progressing. The seizures will start on the left side of her body, in her arm or her leg, and then it will travel to the rest of her body. It has been pretty scary when it happens when she is in the shower, or holding a knife.

Despite her struggles, Adalyn is extremely loving, and beautiful, and creative, and sweet as a button! She works so hard to understand her illness and her body, but it's not easy. She loves animals, especially her pet dogs Leo & Raven and bearded dragon Ricky.

Adalyn's Journey