"We Won't Let ALS Steal Our Joy"

By Erika Gram,
ALS caregiver & daughter

Our home has always been filled with family, friends, and joyful celebration during the holiday season. It’s a time to connect with loved ones and create lasting memories.

After my dad was diagnosed with ALS in March of 2017, creating holiday memories became especially important for our family. The average life expectancy for someone with this disease is 2 to 5 years, so we understand that every moment we spend together is precious.

My brother and I moved back home so that we could make the most of every day with our dad and to help with his care as his ALS progresses. While my dad is the one who received the ALS diagnosis, all of us – my mom, my dad, and my brother Seth and I – are committed to living with the impact of this disease together as a family. This summer, we even traveled to Washington, D.C. to share our family’s story with Congress. All four of us will continue to fight alongside the ALS community to raise awareness of ALS and to help find treatments and a cure.

This year we will defy the odds and enjoy another holiday celebration with Dad. We won’t let ALS steal the joy from our time together as a family. We will face what comes together.

Help us change the future of ALS so that no other family has to face a future holiday without their loved one because of ALS.

7 thoughts on “"We Won't Let ALS Steal Our Joy"”

  1. God bless yall. My mother died of this disease six years ago and I understand the struggle . Family is a big deal during this time, stay strong and and enjoy your time with your dad. Such a horrible disease.

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  2. Beautiful post! How blessed your mom and dad are to have you and your brother to go through your journey as a family. Many of us are on this path of caregiving alone. Yes, “every” moment is precious. ALS teaches us that as we face a new “normal” every day. Keep making memories!

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  3. Such a pleasure to read your positive post. My son was diagnosed Feb 2017. It has robbed him of everything except breathing and eye movement. We will spend Christmas Eve with him and our grandchildren. I love him with every ounce of me, and we will make memories! A very Merry Christmas to you and your family. We know God is
    with us on this journey🙏😔

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  4. My so Michael DeCicco died on March 1st 2019 he was 59 years old we celebrated his 60th birthday on October 25th 2019. he was told it was als on 2014. I missed him this year Christmas was not the same with out him. We had a 3 mile walk in his honor in Eisenhower Park Hicksville NY excellent turn out with friends and family. . I pray for him every day

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