A DAY IN THE LIFE OF LUKE

DATE

I started this Go Fund Me page for Luke 18 months ago to help him continue to stay in his own home. It helped so much. We kept him going for 15 months. It averaged out to be about $270+ a month that went toward utilities, things that made him more comfortable, etc. Not one penny was frivolously wasted. Giving on here ends today; this need is no longer a priority because things have changed. I will still use this as a way to get updates out, but that is it!
A few months ago Luke’s brother had moved out and he realized he could not live alone. So slowly he started staying here, BUT let me make it clear his dream is to go back home. This is temporary. It has made it easier on me, but we are trying to work on his home to make it easier for him to live in i.e. walk in tub! I realized just how bad he was getting when he started staying here more. So many of you know someone who has MS, those people go to work and live somewhat normal lives. That is so NOT the case with Luke. His life is anything but normal. So the following is the day in the life of Luke.
I give him his “wake up pills” about 9:00 a.m., he goes back to sleep until they kick in and he has no choice but to wake up. He stumbles to the bathroom, grabbing the furniture, walls or anything to get to where he needs to go. He has breakfast, and then he sits. Any other activity and he heats up and both eyes go blind. So he spends his days, reading, playing video games and hanging out with us (we try and watch a movie a day with him). His legs are so weak; he shakes and or has periods of clinching/stiffing of muscles. He is in extreme pain throughout his bones. He stays up later than we do; but I feel he needs some alone time. I get his meds sat out (with his injection). I will not go into all the appointments, calls that need to be made, because this is not about what I do. I also don’t want to embarrass him by telling everything, but he is deteriorating before my eyes. He has the most aggressive form of MS and has no future without this Stem Cell procedure. Now that has given him hope.
Family and friends have deserted him. His birthday was yesterday and I do not think his brothers, Grandma, Aunts, relatives, friends contacted him. Only his sister, who texted “Happy Birthday”, not, how are you or how you feeling. What happened to family, especially ours??? In fact sadly 99% who gave on this page were our friends, only one family member, my cousin gave. I honestly wish Luke’s family would just take the time to contact him. What a lonely existence for him.
So I want to thank all of you who gave, not just with money, but with your time, to pray for Luke and Andrew and I. No one knows the heartache of watching a child fight something this horrendous unless you have been through it.
God Bless you all and now we fight to get to Chicago! More on that later.