I have talked many times on our Caring Bridge site about Paul, Angie and Avery Akeman. Avery is a very special girl!! She is an adorable four year old who has had to endure a lot in her little life. She has been in the hospital a total of 372 days and has had 20 surgeries or procedures requiring anesthesia. With all this medical intervention, Avery’s case is still a mystery. To read more about her story go to: www.caringbridge.org/visit/averygraceakeman
Some of the Akeman’s friends have been planning a way to bless them financially to help with all the medical bills. The amount of money that is required for the things that Avery needs daily is a highly overwhelming number. There was a benefit last night to help with this effort. Cory, Alex and I were able to attend and we feel very blessed to have been able to witness the outpouring of love for this family.
The benefit consisted of a dinner, silent auction and live auction. I know that it is hard to accept financial help and I can’t imagine the humility involved in receiving on this large of a scale. I know that it sometimes feels like you can’t bless others in the way they are blessing you. But I want to say that Paul, Angie and Avery bless me and so many others way more than any amount of money could bless anyone. The way they have handled everything that has come their way is a true testament to their faith in Him. In the midst of their trials, they continually concern themselves with others and what is going on in our lives. Angie has been a huge blessing to me and has had many words of wisdom since we have been on our own “Caring Bridge Journey”. Thank you Paul, Angie and Avery for what you mean to so many people and for the way you continue to bless others with your love and kindness!! I loved getting the chance to give you a hug!! We love you!!
Cory, Alex, me, Angie and Paul
Unfortunately, Avery was not able to attend the benefit. She cannot risk getting sick even with the most minor things because her body can’t fight it off. I hope to meet Avery Grace someday and see her beautiful eyes in person!
Along with the benefit last night, a website has been created where donations can be made to continue to help with the ongoing medical expenses. www.averyakemansangels.com
We also had an opportunity to meet another family that we found through Caring Bridge. I am really not sure how I found them (but I assume it was through the Akeman’s site) or when I started following their story. The Johnson’s are an amazing family and I feel like I know them because Marianne updates every single day!! Her daughter Makenna has Cerebral Folate Deficiency (CFD) and to be honest I really don’t know much about this disorder. (does that make me a bad friend? Marianne explains it on their Caring Bridge site like this: CFD is a disorder in which folic acid is not absorbed into the spinal fluid and brain. Folic acid is necessary for a brain to function normally.) What I do know is that Makenna is a beautiful 5 year old girl and reading about her life for the last year or so has had an impact on me. She has had four brain surgeries in which a large section of her brain was removed. There are quite a few things that Makenna can’t do but what she can do is amazing and truly shows God’s miracles.
Makenna
I might haven used a picture from her Caring Bridge site....hope that's OK Marianne ;)
I think one of the reasons I felt connected to Marianne, Makenna and their family is that they also go to Cook’s and Makenna’s neurologist is the one who told us about Alex’s stroke. I guess it makes it even more real to read about someone you have never met when you know that they have been in the same offices and hospital that you were in (looking at the same screen with a picture of your kid’s brain). Also, Marianne shares about their lives daily. She is so open and honest and that has really encouraged me. She loves Jesus and doesn’t worry about what people think. I strive to be more like that!!
So, back to meeting them at the benefit. Cory ended up outside most of the night because Alex didn’t think the auction was as exciting as I thought it was! Marianne’s husband Matt was also on kid patrol for awhile too. It did give us a chance to chat and it was so great!! Marianne, I am so glad that we got to meet!! I am so thankful for your friendship!!
Me and Marianne
Me, Angie, and Marianne
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