End stage ALS age 40, 3 children. Terminal illness

I am raising money to support Jeffery and his kids making memories over the next few months. Jeffery is my ex husband and the father to my children. He was a roofer, and loves his family. Jeffery was told on 8/4/23 that he has one month left to live. Jeffery can barely talk. His breathing FVC was 20 at the highest on 8/4/23. He can’t cough, can’t walk, he is suffering. The hardest part for him in all of this is having children and the fear around their trauma witnessing this and missing memories and time with them all. Jeffery has 3 children ages 23, 11, and 5. Jeffery is 40 years old and was diagnosed with ALS aka Lou Gehrigs Disease, his first symptom was September 2022 and diagnosed officially 5/18/23. He is fully paralyzed and on noninvasive breathing machines 24 hours a day, and a lot of end of life medications. We were able to go to Las Vegas as a family and see the Grand Canyon, Sunriver, the beach, and a cabin in the woods. He has a fast progressing form of ALS. There is so much happening and so quickly we need help. Even just a dollar helps. We will need to arrange for his last days, funeral arrangements, making sure his last wishes are fulfilled, and making any last memories he can with his children over the next few weeks. It’s so bad right now and only going to get worse. I do not have the financial ability to pay for costs associated on my own for lasting memories. Every dollar helps support memories being made and his funeral. The things that I want to get are a glass display case for each kid for their dads items given to them, a framed picture with a QR code to get to a special recording for each kid from their dad, memory teddy bears made out of his shirts, heartbeat teddy bears for the kids to have their dads heart beat sound, shadow boxes for each kid, a song made for the kids from their dad through songfich, and driving to the beach for a day. We need help with the cremation, the funeral, the plaque for the kids to visit after he passes away. Jeffery was placed on hospice care 8/9. I have to do this sooner than later because he is progressing towards his passing very fast and already needs machines to help with breathing. Jeffery is handling this the best anyone possibly could. He is devastated but being so brave and strong. Please help us, I hate asking. I am always the helper. I don’t know what else to do. Please share. God bless you all; don’t take even the little things for granted. His first symptom was twitching in the arm in September of 2022. He was officially diagnosed May 2023, and that’s when he fell the first time and started having leg weakness, and his arms were completely paralyzed already. By August 4th 2023 he was fully paralyzed except his neck and face. He had muscle atrophy where the muscles disappear and the ball of the shoulder separated from the socket. They said August he has a month left to live. August 2023 is when he became fully dependent on noninvasive breathing machines and oxygen to stay alive. He has a rapid form of ALS, he was 38 when his first symptom appeared right before he turned 39. All of 39 has been declining towards death in what feels fast and slow at the same time. He doesn’t want to die, he wants to live and play with his kids experiencing life. He is so proud of his children and loves them so much. We have put together coping corners for the kids with comfy hanging chairs in their rooms, pictures of their dad, books on grief and loss, fidgets and coping things. I am going to keep updating because Arayah specifically asked me to. During the last two months I haven’t updated because things have been scary, hospitals, medical trauma, and heavy family moments. It’s all heavy; and if she wants to heal out loud and be open, that is what we will do! Arayah started middle school and loves her teachers and school. Ezrah started kindergarten and has amazing relationships with his wonderful teacher and the school counselor. We are so blessed to have people who are loving us through this time, especially the children! Every caring adult matters, thank you!!

I am reaching out to our beautiful community because I know it takes a village and I am doing all I can to support my children and their father in his passing. Jeffery is the father of my two children, Arayah is 11 and Ezrah is turning 6 on 11/16. Jeff is also the father to Andrew my bonus son who is 23. This is the most amazing bonus son and all of our families have remained close despite Jeffery and me getting a divorce.

Jeff has continued to fight for life in various capacities. He struggled with addiction and was able to overcome through diligent hard work. He then was diagnosed with a brain tumor requiring intensive brain surgery when Ezrah was a month old. Following brain surgery, Jeff has fought mental health, seizures, another tumor on his thyroid, and struggles with communication following brain surgery.

Jeff got in a really wonderful place, our co-parenting came to a strong and solid place, and then the unthinkable happened. Jeff started showing subtle symptoms last year and has been working extensively with multiple doctors and health professionals. He has spent 5 days in the hospital receiving intravenous medicine treatment. The doctors have done everything they can to rule out every possible diagnosis, however they have finally given a diagnosis of Lou Gehrig’s disease, also know as ALS. It was determined that Jeffery doesn’t have genetic ALS, however it is a rapid and severe progressive form of the disease.

Jeff’s symptoms have continued to increase to a point of loss of function and ability, he is quickly declining. Our children are all struggling. The beautiful thing is these kids have such a wonderful support system with family, bonus parents, and are all coming together to find ways to create the most positive memories to be left with. We have the blessing of being able to prepare, not everyone gets to prepare of their dad dying.

I lost my dad when I was a very little girl, and the impact on my life has been insurmountable. My heart aches as I prepare for my children and their father in an intentional way. I am so beyond thankful that although it will be a continued fast decline resulting in death, we have a chance to prepare for the children’s hearts and memories.

Jeff hasn’t been able to work since he had the brain tumor, and now with this new diagnosis there is no way he can do anything other than go through each day knowing that he will die. Jeff deserves and the children deserve to create magical memories together before he passes away. I wanted my children to have a big memory that is magical, to help mitigate the risk of having a memory of watching his decline towards death. We decided to go on a family vacation to Las Vegas, Sunriver, the beach and a local cabin.

I have been a single working mother, in graduate school, working in social work to give back to my community, and I don’t have the money to support this for them. I graduated with my MSW in June 2023, and have been off for 4 months making 90% of my pay in order to support what matters most and it’s these last days for the children and Jeff. While it is not easy to make 90% of my pay as a single mother, while additionally paying and putting energy into more things in life, we are doing it as a labor of love for the sacred promise we are all given, death. I have used my entire savings to be active for the children and Jeff during his dying process to be able to afford memory items for the kids, the family trips, and all of the preparation up until now.

In talking to Jeff’s mom, I was reminded of when he had a brain tumor during the time Ezrah was born, and how the community rallied around us with a gofundme created by someone we knew. I wanted to create this in hopes of the community providing a way to support Jeffery and his children before he dies. Jeff has cried and expressed that it hurts so bad that Ezrah is so young and risks not remembering his dad. I want to create a big memory that is positive and stays with him. I want my daughter who has had to experience so much fear already around her dad to have this moment together with her dad.

Jeff has been such a proud dad. His first born has become his friend. They have grown their bond and it’s devastating that Andrew has to go through this gut wrenching experience. Andrew has a beautiful girlfriend, works full time, shows up weekly for his dad, and loves with his whole heart.

We made video recordings for the kids from their dad, I got professional pictures done with Jeff and his three kids, and recordings of video messages for their graduation, weddings, first baby, and other big moments. Jeff can no longer write so video recordings will be instead of letters. We had necklaces made with his hair in the resin, hug rings, picture bracelets, coping corners, teddy bears with his voice recorded saying I love you, books on grief and loss, a song written and produced for the kids, among other things to connect and love.

If you can share this, if you know of any resources to tap into, or have any ideas for additional support, all is welcome. Most of all please pray for his children and his family, this is the most gut wrenching experience for his family and loved ones.

Jeff has lost all mobility and is fully paralyzed except his neck and head, and it has now spread to his lungs. We are prepared to fight by his side, and have been coming together as a family to pick up and drop off to support him seeing his kids since he can no longer take them on the weekends. My partner has been so gracious in coming together and being a supportive figure throughout this devastating process.

Thank you to everyone for sharing, praying, checking in, loving the kids extra, donating, it all helps.