Recently, members of the Almonte Civitan Club listened to Angela, 12-year-old Eila’s mom, speak of their family’s challenges in dealing with the little known FOXG1 syndrome that has affected Eila.
At birth, Eila arrived safely, a beautiful home birth experience. Looking back on her first 15 months, the things that stood out about Eila – small head circumference, no first smiles, difficulty with feeding, colic, and constant crying – are now known to be common characteristics of FoxG1 babies. Amazingly, it was only in 2014 that Eila was diagnosed. During the intervening 11 years, she had been seen by countless specialists and underwent what seemed like endless tests, all unable to determine the cause of her difficulties. Now Angela knows why: they just hadn’t discovered FOXG1 yet.
FoxG1 is a rare genetic mutation that impacts brain development and function. This severe neurological condition is characterized by seizures, inability to control body movements, and lack of speech. Many of the children cannot walk or talk, and they struggle to communicate their most basic daily needs. Most cases of FoxG1 are non-inherited and have no family history. There’s no cure for the FoxG1 syndrome, but medications, physical and speech therapy, and nutritional support help manage symptoms, prevent complications, and improve quality of life.
Civitans couldn’t help but be awestruck by the love, devotion and courage of Eila’s family members. Angela and her husband are helped by their twin 8-year-old boys in caring for Eila, who is unable to care for or feed herself. Some help is provided by patient care workers and the extended family that live in the area. This is a recently identified condition, affecting just over 100 persons worldwide, with only 3 in Ontario.
Support through the sharing of research findings, best practices and networks of parents with FOXG1 diagnosed children is very limited at this time, although growing. Eila and her family need to travel to the United States for specialized treatments and care. This June, they are hoping to attend the first Family Education and Awareness Conference for families and health care practitioners in Itasca, Illinois. This is the only conference where parents and professionals will come together from all over the world to learn the most current recommended care and advocacy strategies for every stage of life. They will hear first-hand the latest in research and clinical trials.
As can be expected, on-going treatments in the United States and the upcoming conference create a significant financial hardship. The LGBT Lanark County Civitan Club is focusing much of its fundraising efforts and energy towards helping relieve this hardship through the sale of FOX1 coffee cups. They are also organizing a Fundraiser Dance that is scheduled for this Saturday, April 9, 2016, at the Royal Canadian Legion, Perth-Upon-Tay, Branch 244. Doors open at 8:00 PM, tickets are $10.00/per person and will be sold at the door only. The Almonte Civitan Club has already made a $200 donation and has indicated they will do more to help Eila and her family.
If you are interested in helping through the purchase of a mug, making a donation or attending the dance, please contact the LGBT Lanark County Civitan Club at (613) 802-9883. To learn more about FOXG1, the challenges, the amazing love and devotion being shown by parents and others and the hopes for the future, please go to the International FOXG1 Foundation’s website at www.foxg1.com.
It’s tough enough raising a family. Not knowing what is affecting your child’s development, then eventually learning that she is affected by an extremely rare condition for which there is little understanding and no known cure, while having to support Eila in every way, is an immense challenge. Angela and her family unselfishly and lovingly undertake this daily. Looking into Eila’s lovely smiling face and bright eyes, one forgets about FOXG1… for a moment. Help as you can knowing that Almonte Civitan and LGBT Lanark County Civitan Clubs are helping too.
Submitted by Bob Lesser with photographs provided by Eila’s family.
