Nolan's Fight for Sight
Our little rainbow baby, Nolan Briggs was born November 29th practically sleeping and unbothered by the commotion he just endured. It wasn't long after that our lives would be drastically altered in a gut-wrenching way.
At about 4 weeks, we noticed something was just not right, my instincts just kept alerting me to keep pursuing this feeling. One day, during face to face time, I noticed Nolan wasn't quite tracking myself or toys. This wasn’t abnormal due to his age, but it didn't stop me from googling info, and I read to take a photo with a flash to determine a red eye reflex. I thought, 'why not, give it a try'. To our surprise, every shot, every angle the dreaded white, cloudy eye reflex was very apparent. This was when worry started to set in. How could this be? We saw the midwife and optometrist shortly after who confirmed a normal red eye reflex in the left eye but his right eye needed attention. A referral was sent and off to Sick Kids and we went only a few short days later. We were hoping it was just a cataract that could be fixed but realized the urgency when the silence during his initial examine encumbered the room. After, what seemed a lifetime, the doctor said it's not a cataract and I'm not seeing any "changes" in either eye. We were booked for ultrasounds right away and sat and waited. 'This is serious', we thought but had no idea what we were in for. The oncology specialist came waltzing in with his carefree, matter of fact demeaner stating, "your son is visually impaired in both eyes". Let that sink in. In this very moment, it was as if we were on some horrible prank television show, this just couldn't be our reality. He stated Nolan can possibly see shapes and light, but further testing must be done, he did however state that he believed Nolan did not have retinoblastoma (cancer of the eye). The more the discussion went on, the more I felt a piece of me being ripped away and disintegrating before me. My son is blind. I lost myself.
The following week we went back to do a further test to determine brain activity to the eyes which we ended up completing twice as the first time he fell asleep. We first spoke to a genetics specialist who stated that both of Nolan's retinas were detached and there were three potential causes: PRFV or two genetic diseases called FEVR or Norrie disease (the worst of all three). We went ahead with genetic testing not knowing much about any of the diagnosis but just wanting to get to the bottom of this issue. The genetics doctor also stated that the test revealed that Nolan has minimal brain activity in response to the light, suggesting that he can't even see light. Our baby is blacked out. He went from responding to sunlight and flashes to complete darkness. Our hearts were shattered. After waiting all day, the retina specialist spoke with us for a total of 8-10 minutes as he came straight from and was heading straight back to, the Operating Room. The first thing he mentioned was that Nolan's case is “pretty severe” and he “believes it is Norrie Disease”. How could our baby have the worst of all three possibilities? My mind blacked out as all hope had left the room. We were told that vision recovery was extremely rare but gave him a 50/50 chance with surgery. 'What did this even mean?', we thought but we knew we wanted to give him a chance.
Norrie Disease is a rare genetic disease that affects 0.001% of the population and unfortunately does not only affect vision. Due to a mutation in the cells responsible for blood vessel growth, proper development is hindered. This disease is also associated with hearing loss, cognitive/behavioural disabilities and intellectual delays. What a way to knock a parent down even further, right?
So why do we reach out to you all? Simple. For one, to raise awareness to this awful disease that affects people’s life in multiple ways. Nolan among others diagnosed, will endure several surgeries throughout their life due to continuous leakage of the underdeveloped blood vessels which create growths in the form of scar tissue that will ultimately pull at the retina, causing detachment.
Secondly, we happened to find a phenomenal human being and doctor, Dr. Capone who specializes in Norrie disease and has been eagerly working towards a cure as he states, "these are my people". People from all over the world have been treated by him in Michigan due to his expertise and experience with this very rare disease. Listening to his lecture immediately brought a sense of comfort and hope in a world we referred to as a nightmare. We will be taking Nolan to the one person who is deeply passionate, knowledgeable and experienced regarding this disease. Even if we can just get light perception for Nolan and preserve his eyes for future opportunities, then that's what we need to do for him. This will be a long, hard journey ahead for us all and it's with great sadness and desperation that we ask for your help. It takes a village to raise a child and, in this scenario, it couldn't be more accurate.
We will give Nolan all we've got and give him the fighting chance to be his best version of himself that is happy, healthy and gives him the opportunity to be a successful member of his community. Your help will be a large factor in Nolan’s struggle to obtain some form of vision. Your support and positivity are greatly appreciated as we trek this unknown journey to the best of our ability. Saying thank you will truly never be enough.
Love,
Nolan's Parents
Message from Organizer:
Each surgery is approximately $20,000 usd. That is approximately $28,000 cad. Our goal is just a small fraction of what little Nolan will need to fight
for sight. Add in travel, accommodation and missed work days and we are easily over $30,000 cad for each trip down there. Your contribution means
the world to this family. Thank you so much!
Links
Conference- Dr. Capone
https://www.youtube.com/watch?v=A_Os0FThdjM
Inspiring Ted Talk speaker
https://www.youtube.com/watch?v=lml2-UG3yN0&fbclid=IwAR2jghQCRKCLDdPTAQFQ1UNXWoTNDPGHY_7jFa5KeNjqaG4tzP7fI5oWiNk
