As most of you know John was diagnosed with ALS aka Lou Gehrig's disease in early 2018. As of right now John is doing very well all things considered.
John has Limb Onset ALS which means that his symptoms started in a limb versus the bulbar area (voice area.)
Life expectancy of a person with ALS averages about two to five years from the time of diagnosis. Although there are variables with this disease as with any other disease. The fact that John has limb onset is a plus for him as the disease will likely move to his other leg first and then up through the body.
ALS will eventually take away his ability to walk, dress, write, speak, swallow, and breathe. How fast and in what order this occurs is very different from person to person. Again, we are praying that John will beat the odds and have a longer survival rate.
Right now John's symptoms are as follows: His right leg is the leg of onset so he has muscle weakness and walks with a gait. He can no longer walk more than about a 1/4 mile with out having pain and fatigue. He has constant fasciculations through out his body; these are the muscles twitching. Spasticity which happens when muscles are continuously contracted which then leads to muscle stiffness and tightness. Overall he is fatigued most of the time but John has always been an active person and therefore he simply fights through it every day.
Early onset ALS is difficult for people to understand because the symptoms are more internal. With the exception of his gait one can't "see" that John has ALS. But trust me when I say..."we SEE the effects everyday" He can no longer walk up or down stairs without having to hold on to something or someone. Getting out of bed in the morning is hard and painful everyday. John has always been a hard worker around the house doing all kinds of projects. He can no longer do these things because of fatigue and muscle weakness. I could go on and on but I won't.
I am raising funds for Two different reasons:
1. We are being proactive in starting a medical fund for John so that we can be prepared to take care of all of his needs. We recently purchased him a power wheelchair for long distance needs and we will need to purchase a van to make it easier for him to get the chair in and out of. We have already had approximately $30K in medical bills and we expect that to continue to increase. In addition to this we will eventually have to make decisions about our home and whether we will make modifications or sell it and move to something that is better equipped for John.
2. I am running with the ALS team in the New York Marathon on November 4th and will be raising funds to donate to the ALS association for research. ($4K will be donated to ALS research)
Please pray about it and if you feel called to do so I pray you will do so with a cheerful heart. Know that we appreciate each and every one of you. We have been blessed with a support group of friends that have been amazing through all of this. We love you and we our humbled by you.
2 Corinthians 9:7
"Each one must give as he has decided in his heart, not reluctantly or under compulsion, for God loves a cheerful giver."
With much love and grace,
John, Belinda, & Savannah Egan
P.S. If it feels right please share this with your network.
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