Thank You -Support for Atif & his journey with ALS
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FINAL UPDATE - Thank You
Our brother passed at the age of 47 on Saturday, September 30th, right after the harvest moon that he longed to see. Through extreme suffering, 2 years since his diagnosis, he achieved mastery in life.
Those that were around him in the last few months witnessed the transformation — his own grief brought on by the insufferable illness and old wounds and struggles that he carried for too long — all that remained was forgiveness, gratitude, kindness, and pure love.
Those that cared for his needs while his body waged war served him in reverence. An honor and focal point for so many, observed through a weeklong stream of visitors - childhood friends, college roommates, a beautiful amalgamation of community from 25+ years in Boulder, and steadfast heartfelt new community that Atif built during his critical stages with ALS.
He passed peacefully at dusk, Maghrib time, with his siblings cradling him in love and prayer, and God’s alignment evident in nature’s signs.
Atif will be remembered for his gentle spirit and smile, kind eyes that quietly conveyed his heart’s message, intellect and wise perspectives that left friends and strangers in awe, love for the outdoors, love for books, childlike joy, his will to live life uniquely his way, and his determination to survive and die when he knew.
He will continue to be a beloved son, brother, uncle, and dear friend in all of our hearts. A gallant trailblazer that fulfilled his life’s purpose with dignity and is directing ours.
Atif’s intention was to return to open land, leaving a low footprint on Earth. His form laid to rest directly in soil with a view of the canyons at the Colorado Burial Preserve. His soul has returned Home.
Inna lillahi wa inna ilayhi raji'un : “Indeed, we belong to God, and indeed, to Him we return."
Please honor him and remember him in your own ways. He held immense deep gratitude for your generosity.
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"Die happily and look forward to taking up a new and better form. Like the sun, only when you set in the west can you rise in the east."
- Rumi quote read by his courageous ally, Dr. Elham Manea , via Zoom on the day of his passing.
September 29, 2023
Abundantly With Love,
Shaista, Shakira, Akif
March 2023
Dear Friends,
We want to update you about Atif's current state and needs.
Atif has been with Hospice since December, when it was medically determined that he would have 6 months or less to live. Between December and mid-February he endured 2 different nursing homes where the conditions were very difficult and he was in a lot of distress.
In mid-February, he was fortunate to have been able to move to a private rental outside of Boulder in a beautiful, pastoral neighborhood. His friend Kondor used Atif's funds to hire caregivers to provide 24/7 care. While the situation is not perfect, and Atif's condition continues to deteriorate, he would really like to be able to stay in this private rental through the rest of his life.
Medicaid will soon start to pay for much of his caregiving, which will make this private option a bit more affordable. In this current period before the Medicaid funds are available, and once Medicaid caregiving kicks in (when we will need to pay for supplemental care) we would like to make a heartfelt request for donations to allow Atif to continue to live in this quiet, supportive environment. If you are able, would you consider donating what you can to help pay for his care and rent over next few months?
Please also help us spread the word.
With our deepest gratitude for what you have already done for Atif and for what you continue to do for him,
Atif and his circle of support in Boulder
Atif with one of his friends!
One Year Later
I am here to ask for support in facing my experience of ALS (a/k/a Lou Gehrig's disease), a rare and life-threatening illness which has truly impacted every aspect of my life. I cannot complete my biggest treatment goal without the support of others.
It has been a year now since we first shared the news of my diagnosis and survival period. In that year I have undergone significant loss of motor function and body mass. I am entirely dependent on the care of others, this includes eating, bathing, dressing, transferring (from beds, chairs, wheelchairs), and composing this message you are reading now. This is all in addition to the psychological process of grief and mourning my own physical loss in a very short span. In April I returned to Colorado with the certainty of being able to join a Healey Platform Trial for ALS.
On June 27th I underwent surgery for a chest port so I can continue to receive IV’s and have blood draws. In June I also began participating in a trial testing the efficacy of a drug called Trehalose for the slowing of ALS’ progression. To date I have not felt any improvement or benefit from the weekly infusions I have been getting. At the beginning of August I had a fall and fractured my hip, after which I spent 10 days in a rehabilitation hospital. That experience weakened me immensely and I had to fight to be discharged before completing their prescribed 30-day stay.
I am fortunate now that I am with my best friend for nearly around-the-clock care. Last week I had a pulmonary function test to show my breathing to be sufficient for the placing of a feeding tube. That also qualifies me for a trial that involves cortical stem cell transplantation into the cortex of the brain. I have been in the screening process of this trial and am planning to travel to Cedars-Sinai in Los Angeles for final approval on November 8th. The transplant and procedure are being funded by the NIH and the California Institute for Regenerative Medicine. However, this funding does not cover my costs of travel, assisted living, and various arrangements I must make in order to stay in LA and participate in the trial. Below are links to the clinical trials government website, and a blogpost by Cedars-Sinai’s neuroscience department.
I felt that I needed to post an update from myself after my announcement and support page was shared last year. If you are receiving this you have remained in my thoughts and I am grateful for your heartfelt response and outpouring of support. It was a moving and touching experience and has allowed me to continue my difficult journey.
Please consider donating what you and your loved ones can to help me in my journey and with my treatment.
In Boulder with best friend, Lars
(written by Atif with the help of his friend in Colorado, Sept / Oct 2022)
Original Post, One Year Ago:
Our older brother. The one we intrinsically look up to. He has a wise soul, trusting to a fault, and the most loving and generous heart. His doctors at The University of Colorado Neurology Clinic - Anschutz Medical Campus have given him 1-2 years to live. Atif has been diagnosed with ALS (Amyotrophic Lateral Sclerosis ), also known as Lou Gehrig’s disease.
We are in learning mode and trying to understand how to slow down the rate of muscular deterioration and enhance his Quality of life.
ALS is a rare neurological disease that affects the nerve cells responsible for controlling voluntary muscle movement. People experience progressive loss of the ability to move, eat, speak, swallow, and eventually, breathe. Sadly, there is no cure. According to the CDC, approximately 5,000 Americans are diagnosed with ALS every year.
Pagosa Springs, Colorado - July 2019
Atif has been in a lot of pain for more than a year now, and the twitching and muscle movement loss in his lower extremities is beginning in the upper. Independently living for his entire adult life, an avid hiker and nature lover that embarked on a solo 2-week trekking trip to Iceland in 2019 - it’s become difficult for him to perform daily tasks, and Atif is now staying with his brother.
Iceland - September 2019
Given the uncertain road ahead, but the known ending - we are humbly asking for any support you desire to give to help toward his quality of care. Treatment options are limited and time-sensitive. Stem cell treatments appear to be the most promising as they have the potential to halt, delay, or ameliorate the effects of the illness. The costs are fully out-of-pocket, and most treatment centers reside outside of the US. We are in the process of registering with The ANOVA Institute for Regenerative Medicine near Frankfurt, Germany. We are continuing to vet all options with the guidance of doctors and family referrals.
Atif is 45 years old.
Boulder, Colorado - August 2020
Showing him that he has love and support in his corner is critical to strengthen his mental fortitude. And we hope, enables him to push on and share lasting memories with his much beloved nieces and nephews, parents, siblings, and dear friends. We are coming together as best as we know and doing what we can to support him emotionally and financially. Your additional support means everything.
If you are compelled, please reach out to Atif via phone, text, email, social media and relay memorable moments once shared. The rollercoaster can be steadier with a stream of love.
Thank you for allowing us to share this heart shattering news. We believe Atif is not done making his mark.
Abundantly with love and gratitude,
Akif, Shaista, and Shakira
Nederland, Colorado - August 2020
Wimberley, Texas - February 2019
Organizer
Atif's Friends in Colorado Ali
Organizer
Dallas, TX
