Helping Wes On His Journey
Welcome to Westley's Journey! Thank you for taking the time to visit his page.
Rachel and I, Ainsley (we're pals of Sean & Christina's - nice to meet you!) have created this page to raise awareness about baby Westley's rare diseases and to give the family a boost during this challenging time.
Since his arrival, Westley has touched our lives in ways we did not expect. Westley is a super strong little boy, but he has a journey ahead that no little person should have to endure on their own. Your precious gestures of support, donation and encouragement mean the world to our dear friends and will directly help them out with Westley's therapeutic expenses, household items and more. As just one example of their daily reality, Christina is currently not working to be home to care for him. Simply put, she IS supermom realized.
If you haven't had the pleasure of meeting Wes, the adorable red-headed lover-of-life munchkin, read on to learn about his journey to date. Below are a few words from Christina herself, when she initially shared Westley's story with family and friends several months ago:
"Almost one year ago we welcomed our beautiful, amazing son, Westley into this world. A mere 3 weeks later we found out that our journey with him would not be as expected. Our Westley is one in a million. Actually one in a million millions. Westley has a form of SCID. Severe Combined Immune Disorder.
If you don't know what that is, the best comparison I can tell you is to think of the "Bubble Boy". This is the same illness my son has. Westley has no immune system. We have spent his entire life in isolation. Only venturing out for doctor's appts, blood work and the occasional visit to the grandparents. A simple cold could be fatal for him. Westley has gone through a battery of tests to determine the cause of his illness and through whole exome sequencing that looks at the 30K genes he has, it was determined he has not one but two genes with a variant. One, which we suspect is the cause, is only recorded in 6 children worldwide (and yet only Westley and one other of this 6 have an immune disorder), and the other has never before been seen. So you see our Westley is extremely rare.
He also has a number of other medical issues including mircrocephaly...yes the one suspected to be caused by Zika, but no his is not caused by Zika. He also has epilepsy, hypertonia (his muscles contract uncontrollably making it difficult to do most "normal" baby things. He also has cortical vision impairment. His eyes are fine but the signal the optic nerve sends to the brain is not working right. He also has a cleft palate (hole in the roof of his mouth) and Atrial Septal Defect in his heart (a small hole/flap that should close on it's own).
I pray every day that we find a cure or a treatment so that he can go out in the world and experience it all. He may be able to have bone marrow to correct the immune system but we are still awaiting studies on his genes to determine if it will work. Sean and I are not a match so we have to go to the world wide bone marrow registry for an unrelated donor. If marrow won't work, there is no cure for him. At the moment he can't even have vaccines because they could kill him because they contain live viruses. So you see, when the government urges you to vaccinate, my son is why. If you don't vaccinate, these illnesses can come back and my son is defenceless.
We have spent the year not telling many people about Westley other than those closest to us. We needed to process, grieve and learn how to adjust to our new life. But I thought what better day to tell our story than a day all about him, Rare Disease Day.
I want to thank our friends and family that have been by our side this whole time. We could not have made it this far without you. Your support is appreciated more than you will ever know.
Westley is unique and on his own path, we love him to bits and our lives are so much fuller with him in them. He will achieve all he wants to achieve in his own time. If he didn't have these issues he wouldn't be the adorable, feisty, joyful, determined, strong, warrior that he is. Mama and Dada love you so Much Westley XOXOXO"
Rachel Fodor and I will be posting lots of updates through this journey and we welcome and encourage any questions or suggestions via the contact form on the donation page.
On behalf of Sean, Christina, Wes and all their loved ones, we thank you from the bottom of our hearts!
Rachel & Ainsley
