An update is in order and some fun on the horizon!

As always, we are out here living life one day at a time.

Sometimes one day feels like too much, so I go hour to hour and in the hardest of times, minute to minute. We have dealt with colds and various other illnesses, complete with scary high fevers, but we have made it through, and without Covid to boot! We are still very cautious, but I do work in a high exposure environment so I feel grateful we have made it this far. Thank you to vaccines and high quality masks! Our biggest challenge right now is Rich’s speech quality declining and the many new challenges that brings.

I am always making plans and putting things on my calendar so that I have something new to look forward to. Whether it is simply a day with Rich, getting my nails done, a Mom’s night out, or something bigger like the upcoming Compassionate Care ALS (CCALS) Gala, anticipating these special events, big or small, keeps me going!  CCALS is an amazing group of people who help ALS patients and their families in every way! For us in particular, they have delivered us equipment, helped with, and continue to help with the nightmares of Masshealth, offered virtual support groups, helped with communication devices, allowed us to stay at their fully accessible beach house and so much more. The gala is one of their largest fundraising events!  The founder, Ron Hoffman, has been generous enough to offer me a table for ten at the gala.

Reserving a whole table at the event usually costs $4,000 and to thank CCALS for making a table reservation possible for me and my family I would like to raise as much as possible toward that amount! I am filling the table with family and friends, old and new, some I have known my whole life, some I have met on our ALS journey and others are newer friends, some are close by, and others help as much as they can from afar. Regardless of where we met along the way, these are all people who I love and support me in more ways than one, and the opportunity to gather together in one place would mean a great deal. A donation towards CCALS is a donation that impacts me, Rich, our children, and all of these people closest to us and supporting us. There are a number of ways you can donate for this event, and as always, every little bit counts!

My plan is to gather as much as I can and donate it as a lump sum to CCALS. To participate in this you can Venmo me at @leah-devereaux.

If you would prefer, you can mail us a check- message me for my address!

Another way to donate is by following this link https://ccals.org/donate/

• Select “Make this an honorary gift”
• Select Type: “In honor of”
  • Devereaux-Razumny Family
• Send notification email to [email protected] so that I can keep track of our donation amount
• select “gala” and in the notes write- “donation toward Leah Devereaux’s gala table”

One last, more personal, but important, request. We are in search of a caregiver to help me in caring for both our children and for Rich. This is not an easy ask and further demonstrates all we have lost and are losing. If you or anyone you know is in search of a job, please have them contact me at [email protected] for the job description. There is no prior training or education needed, just a drivers license. The position will be approximately 30 hours per week, competitive hourly rate offered.

Thank you all for your kindness and generosity, today and always!