Last September when Oliver’s doctor gave the diagnosis of xeroderma pigmentosum she advised me to keep Oliver inside our home and to apply sunblock to him every two hours, have him wear long sleeve shirts, pants, socks and a hat, INSIDE! It was September and it was sweltering hot even with the air conditioning running cool.
When I left my house that September morning I thought I was just going to be taking Oliver to a pediatric dermatologist for a second opinion. In my mind I thought it would be a quick appointment and I would be reassured that he did not have Carney Syndrome. I thought MAYBE at worst we would just keep an eye on his blue nevus (dark mole common with those of Asian descent). My suitcase was packed and I had planned to take the red eye to the east coast and join my husband on his business trip after Oliver’s appointment that day. I had already stocked the fridge and cupboards with food and special treats and my college bound daughter was prepared to watch her siblings and have some fun with them while I was away for a couple of days. Instead I drove home in a daze and immediately went out and bought mylar blankets, duct tape and rolls of aluminum foil.
My daughter and I covered as many windows as we could reach. We called our family friend and he came over with his son and spent a good while covering the windows that we could not reach. Total darkness seemed like a better option than having to slather on sunscreen every two hours and have Oliver dressed in a long sleeved shirt, pants, sock and a hat indoors. We do have blinds on most windows that block out UV rays but I did not want to have to shadow Oliver all his waking hours to be sure he did not lift the blinds and possibly expose himself to harmful UV rays.
We spent four long months living in the darkness not being able to have a feel for what time of day it was. It was really depressing and taxing on my oldest girl and myself. The younger girls attended school each day so they were exposed to the sunshine quite a bit. I think Oliver and his brother did really well despite the lack of light. It made me sad when Oliver no longer grabbed his shoes and asked to go outside. I think he just seemed to have ‘forgotten’ about the outside world since he no longer had windows to peek through.
Michele Milota, Executive Director of the XP Family Support Group was able to arrange for our home windows to be covered by a protective film that blocks out UVA/UVB rays. Gregg McKay President of Nu-Vue Window Films came to our home on January 17th along with his son, Chase to install the film. I have to say these two are amazing. Gregg has graciously supported the XP Family Support Group. His business is located in San Diego and he made the long trek to our home from SD. I cannot begin to adequately express our gratitude for Gregg and Chase.
The kindness of strangers is overwhelming. Gregg gave Oliver and my family an incredible gift. It’s amazing what sunshine will do for the psyche. Our home is now filled with an abundance of light. Oliver can now safely look outside and see the world around him-safely. Hearing Oliver giggle and watching him point to the butterflies or birds passing our window brings a tremendous amount of joy to my heart. Besides our vehicle windows, our home windows are the only windows Oliver can look out of without wearing his protective gear. It’s something most people don’t even think about.
We are grateful for this gift of light. We are forever thankful to Gregg McKay and to the XP Family Support Group along with 3M for making this happen.
Thank you for brightening Oliver’s world!
And if you are in the San Diego area and in need of window tint for your home or business please give Gregg McKay a call.