Connor recently underwent genetic testing which confirmed that Connor has a rare and rapidly progressive brain disease called Infantile Batten Disease (CLN1). This diagnosis is absolutely heart breaking for them and all who know and love the Perran family. There currently is no cure or even treatment for this vicious disease and therefore fatal.
Connor has grown up to be a vivacious, fun loving, joyful 4 ½ year old boy and now little by little will digress, losing motor skills, speech, eye sight, brain development and muscle development. While other parents of pre-school age kiddos are recording milestones and firsts, Tom and Renee will be waking each morning wondering what will be lost today. Connor’s brain is shrinking. Time is limited now before he will be completely reliant on the care of others and medical professionals. Mercifully, as the disease wields its wrath, he will lose awareness of his situation but will retain his hearing so he can hear and be comforted by those who love him. Connor’s lifespan is predicted to reach ages 10, which are many years of intense hands on care and medical care.
As Tom and Renee’s friends, we have started this GoFundMe page in the hope of raising money to help with long term care costs so that they do not have to worry about money besides the overwhelming heartbreak they are facing currently.
Tom and Renee, along with their oldest son, Jake are dedicated to fighting for Connor, spending as much time as possible now as a family and ensuring he enjoys every possible moment of his life. Connor’s favorite things to do are jumping on the trampoline, listening to music, and dancing. His joy and love of life and laughter are giving the family strength.
When we spoke recently, Tom wanted to make sure everyone knows how grateful they are for all the support, love and prayers; they feel it, are lifted by it and inspired by it all. He also wants you to hug those you love and if just one thing could come out of this devastating situation it would be that people hug each other more and often. Connor loves hugs, would hug us all if he could so please consider this a hug from Connor. As you move through your daily lives, smile, be compassionate, love big, be grateful, feel joy and do not worry about the small things or tomorrow as tomorrow never really comes, all we have is now.
Peace, Lori Matson and Shaun Dyer.
- Amanda Egan
- Heidi V
- Cibyll Baldwin
- Ryan Haunfelder
- Kathy Davis
Organizer and beneficiary
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