My Nonprofit Reviews

Today, 3-29-24, is Brian's 66th birthday. It's a bittersweet day for me because unfortunately he passed in 2019. With an ALS state of the art "smart house" he might still be alive today. I'm still working on bringing ALS awareness and promoting why Hawaii needs an ALS Residence for those that can no longer be cared for at home. I miss my youngest brother and hope to improve quality of life for other ALS patients.
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WHY HONOLULU NEEDS AN ALS RESIDENCE
Around the lake from Chicago is the town of Benton Harbor, Michigan where Brian Burke grew up the youngest of five children in a blue collar family.
The brothers acquired their love of football watching with their dad who left them fatherless at age 14 & 16. Chicago Bears were their go to team!!! They played some high school football but in reality Brian was just a 6’4” 300 pound cuddly teddy bear, humble and laid back.
When his oldest sister Kathy invited him to Hawaii, he left Michigan at age 22 and eventually formed his own moving business having learned the ropes from his brother-in-law.
Years later, after returned letters and a disconnected phone the family asked Kathy to find out what was happening. Kathy tracked Brian down living homeless in the park barely able to walk. Embarrassed and ashamed he agreed to let Kathy help. She went into social worker mode and the following year a diagnosis was determined.

Amyotrophic Lateral Sclerosis (ALS) aka Lou Gehrig’s Disease was the verdict in 2003. Without a home Brian went into foster care and eventually a long-term care home to better accommodate his size and needs. When he developed pneumonia and could no longer breath, he was trached and put on a ventilator.
His new level of care required placement in one of only two skilled nursing facilities with a respiratory care unit.
ALS prognosis is 2-5 years after diagnosis, so life became a roller coaster of medical limbo for Kathy and the family as Brian’s body continued to deteriorate, losing over 100 pounds. His nutrition, an artificial enteral formula, and hydration was delivered through a gastronomy tube (GT).

Brian’s room had two other patients, all three on vents, feeding tubes and their own TV’s. The amount of noise from everything beeping and needing attention was unimaginable and the space was very limited, divided only by a curtain. Brian was totally dependent on the staff for all his needs as he could no longer move or talk to advocate for himself. Kathy did her best to keep his spirits up.
In 2012 the other brother was diagnosed with Glioblastoma Muliforme (GBM) stage 4 brain cancer and given 12-17 months. He underwent surgery, chemo and radiation and stayed with mom in Michigan. 5’5” mom begged Kathy to come help take care of her 6’7” son in 2015 as he deteriorated. Brian now had to “share” his oldest sister for awhile.

On one of Kathy’s back & forth trips to Honolulu she discovered that Brian had developed a stage 4 decubitus ulcer (bedsore) on his right buttock. This is typical in nursing homes and attributed to lack of proper care. He was seen
in-house by a doctor but after Bruce passed and Kathy was permanently back in Honolulu, they went monthly (by ambulance) to a wound clinic for specialty care. Brian could no longer sit in his wheelchair and was now bedbound and had to be transported by guerney.

Kathy visited Brian almost every day and tried to make life interesting and fun. She did birthday celebrations hiring Mariah Carey and Marilyn Monroe impersonators. Brian was visited by NBA Legends Don Ford and Rick Hill. Brian received a signed football by Chicago Bears Charles Tillman and a jersey signed by Olin Kreutz, etc. When the Bears were headed to the Superbowl in 2007 Kathy was unable to get a Bears t-shirt before they sold out every time in Honolulu so she called her mom in Michigan to help. Blizzard conditions at the time prevented travel so mom called a sports store at the mall, paid by credit card and had shirts shipped directly to Honolulu. You should have seen the smile on Brian’s face…priceless!!! Brian was even given permission to have one beer in his feeding tube usually when watching football.

Living with ALS had become the new normal. Without financial resources or a large family support system Brian was “stuck” with his fate. ALS care is a 24/7 job. Fortunately, there are other options, one being an ALS Residence for specialty care, but not in time for Brian who fell through the cracks and passed in 2019. With better care he might still be alive, although COVID with no sisterly visits would have been devastating for him.

Currently two states have an ALS Residence, Massachusetts and New Orleans. Honolulu, Maine and Texas are all trying to create such a special place that would give pALS (people with ALS) a more hopeful, dignified, meaningful existence. It will take a combined, community effort and a lot of money to achieve it. In Honolulu we are only three, senior volunteers, all with connections to ALS, trying to bring our dream into reality. We could use some help.

https://www.alsfoundationhawaii.org

Looking back on the month of May 2020 I reflect on the impact Covid-19 has had on our ALS community. May is Known as ALS awareness month.
Our ALS community usually has a meeting with the Governor in his ceremonial room where one of the ALS patients acting as our “representative”
receives a proclamation proclaiming May as ALS AWARENESS and ALS FAMILIES APPRECIATION MONTH. This year the proclamation was mailed to us.
At the end of May on the Friday before Memorial Day we usually did a sign waving in front of the state capitol to thank the public for their continued support. Afterward we had a memorial ceremony in the Rotunda to honor all those who have passed away from ALS, adding those from the past year. It is a very touching experience and sadly this year included my youngest brother Brian. However, because of the corona virus we viewed our memorial ceremony on YouTube, alone together.
I hear people complain they have to stay home or wear a mask when they go out. My brother had no home and became homeless because he could no longer work as a mover. He would have loved to be able to stay home but ended up in a skilled nursing facility, bedbound for sixteen years. I hear people are antsy to get out of quarantine. The only way out for my brother was an ambulance trip to the doctor or ER.
ALS patients are especially susceptible to pneumonia and respiratory problems. Unlike COVID, with ALS patients, the transition to a ventilator is permanent. COVID is a virus while no one knows what causes Amyotrophic Lateral Sclerosis aka Lou Gehrig’s Disease. ALS is not contagious but COVID spread can be minimized with safety precautions. Please think of others and what impact you could have on their lives if you unwittingly passed the virus to them and thus their loved ones, some of whom are ALS patients being cared for at home. PLEASE SOCIAL DISTANCE & WEAR YOUR MASK AROUND OTHERS!!!
There are many organizations that are raising funds to research a cure. For those that have ALS now and can no longer be cared for at home due to lack of resources, family support, or accessibility, etc. they should be able to live their life with more meaning and dignity. While my brother was still alive I helped form a nonprofit to establish an ALS residence on Oahu for ALS specialty care; a fully automated “smart house” relying on technology to give patients a better quality of life. That is still my mission: https://www.alsfoundationhawaii.org
It is heartwarming and encouraging to see the outpouring of community love and compassion for the less fortunate and neighbors helping neighbors.
July 9th is the one-year anniversary of my brother’s death. Please help me honor him by donating any amount, big or small, to help us bring about the ALS residence on Oahu.