Help Support My Mom's Fight With ALS

My wonderful mother, Carol Hughes, was diagnosed with a devastating rare terminal disease called ALS (Amyotrophic Lateral Sclerosis), also known as MND (Motor Neuron Disease) on July 2nd, 2024, that's completely shocked and changed our lives. The average prognosis for ALS is 1-3 years from diagnosis, and there is no cure. She has been so brave despite her symptoms having a faster than normal progression, having both bulbar and limb onset begin at the same time. Given my mum is from the UK, it is extremely rare with only 1-2 cases per 100,000 people per year, which has made navigating this situation extremely difficult.

Amyotrophic Lateral Sclerosis (ALS) is a devastating neurodegenerative disease that progressively takes away the ability to move, speak, and eventually breathe. Despite being recognized for over a century, ALS remains severely underfunded, with current treatments offering only limited relief—slowing its progression and extending life expectancy by just a few months. ALS is often referred to as “the bankruptcy disease” because of the crushing financial toll it takes on families. Between medical treatments, adaptive equipment, caregiving needs, and experimental therapies, the costs quickly become overwhelming. Your support can make all the difference. Every donation helps provide Carol with the resources and care she needs to explore life-extending options and maintain her quality of life. We deeply appreciate your generosity and encouragement as we work to give Carol every possible chance in this battle.

Since her diagnosis just 4 months ago, she has lost the ability to talk, can no longer stand up, walk, or use either her left or right arms and hands. She still has some mobility in her legs and and arms, but they are very slow and weakened. She has also fully lost the ability to eat and with excessive weight loss we had an emergency feeding tube (gastrostomy) surgery on November 19th, 2024. Given all of this, thankfully for now her breathing is her strongest point, which fundamentally is the thing that keeps any ALS patient alive. Quite remarkedly, her breathing scores are 4 (the highest) on the ALSFRS-R scale, with everything else now at 0-1. Given this and the unknown time element to this cruel disease, we want to do everything in our power to keep her comfortable, onboard new communication devices and mobility equipment to try and give her back some independence that has been taken from her for the time she has left with us.

Carol has been the most amazing mother and woman, she devoted her life to raising my brother and I, and is always the first person in any room to help other people and put them first before herself. She is a social butterfly, and enjoyed her time the most talking to friends, family and new people with a strong urge to travel and spread happiness around the world. She worked as cabin crew for 27 years before retiring to entirely devote her time to raising her family. She has always treated life as an adventure, travelled the world and made so many memories and experiences both with and without us before our family was made, in ways that can only motivate you to get out and live a little when you hear her stories. I've never known a woman to consistently put everybody before herself, and with this GoFundMe I hope we can all show her it's time to repay that favor.

Because I live and work in the USA, I have also managed to confirm her diagnosis here in California and onboard her into the ALS Association. With this, we managed to secure a USA only medication (Nuedexta), to treat a secondary symptom of ALS that she is suffering with, known as PBA (Pseudo-Bulbar Affect), which causes involuntary laughing and crying episodes on a cruel level and is proving extremely effective for my mother, although the cost of this is $1545 per month as we do not have US medical insurance and again, is not available in the UK. I am frequently travelling back and forward from the USA to the UK to spend time with her, deliver Nuedexta, help provide care with my father and brother, who lives and works in London and is frequently travelling back every weekend. Return flights home are costing us on average $1400 each trip, and I am currently travelling back and forward twice per month for to give her all the support, love and care I personally can. We are now requiring care to come into the home to help, and although we have received gracious help from the MND Association in the UK, the cost of care is still astronomically high, alongside other expenses above and much bigger ones on the horizon.

As you can imagine, the costs of these main two things, along with needing to completely remodel certain elements of the house to make it more accessibility friendly (we have already had a stair lift installed and need to install wet rooms both upstairs and downstairs to allow her to shower safely along with WAV (Wheelchair Accessible Vehicle) rental/hire shortly ahead of us. The costs of navigating everything up to this point have been crippling to our family both emotionally and financially and we appreciate all and any support during this extremely difficult time. The average annual cost per ALS patient is around $70,000.

I will continue to post updates bi-weekly and thank you in advance if you donate or share Carol's funding. We appreciate every single one of you. This disease has completely turned our family's life upside down and we cannot express how grateful we are to be receiving your support, best wishes and funding. Please note that all leftover funds in the end will be directly donated to the MND Association in the UK, who have provided us with so much support and equipment, and also towards Carol's end of life costs.