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Patriotic Kenny Foundation

Ben Saunders - Flawless Cleaning

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Peter Bond

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Ask Uncle Jack

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Khloe

<div>Henry is battling a devastating, rare, and severe neurological disorder called AHC. We are creating a treatment for Henry and are on a mission to raise $3M to pay for it. Thank you for being on this journey with us!
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<div>www.ForHenryAHC.org
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<div><strong>What would you do</strong> if you were told when your baby was 9 weeks old that he had a rare, genetic, incurable disease and might never walk or talk?
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<div><strong>What would you do</strong> if you learned months later that the science to treat this disease is available, you just have to raise funds to make it happen?
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<div><strong>Answer:</strong> You would do absolutely anything in your power to develop a treatment to save his life.
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<div><strong>This is our reality, and that is exactly what we are doing.</strong> Our son, Henry, was diagnosed with a rare, one-in-a-million, severe, neurological disease called AHC. As with most rare orphan diseases, ours lacks funding from industry so we have to raise the funds on our own to develop a life-saving treatment for Henry. The cost is $3M to develop this gene therapy for Henry. We are in a race against time to get Henry treated before he suffers permanent brain damage as a result of this disease.
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<div><strong>About AHC:</strong>
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<div>AHC causes life-threatening seizures, breathing trouble, random bouts of temporary paralysis, and global developmental delay. Any or all of these symptoms can hit at any time, having the potential to cause permanent brain damage (we are very lucky that despite Henry’s frequent symptoms, he has not yet suffered this irreversible damage). Henry has these life-threatening seizures and stops breathing nearly every day. AHC is a degenerative disease which means we risk losing parts of Henry that we can never get back and we are determined to stop this.
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<div><strong>AHC is like having 7 neurological conditions in 1:</strong>
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<li>Paralysis like a stroke
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<li>Seizures like epilepsy
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<li>Low muscle tone like cerebral palsy
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<li>Movement problems like Parkinson's
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<li>Neurodegeneration like Alzheimer's
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<li>Behavioral issues like ADHD
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<li>Learning challenges like autism
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<div>Please help us by sharing our story and donating to our fund so we can not only save our son's life, but also create a pathway for future AHC patients to receive treatment.
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A Treatment for Henry

<div>Julia Amjad Abu Zuiater and my daughter, Dallas Willow, have the same ultra rare genetic disease, Alternating Hemiplegia of Childhood or AHC. <strong>Julia is in a medical emergency amidst the war in Ga*za and needs our help.</strong>


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<div><strong>Julia has been paralyzed in an AHC episode for the entirety of the war (7 months). </strong>She used to be able to sit, talk, eat, swim, play, and try to walk. But now she has been paralyzed for 7 months, stuck inside her body in an AHC episode, with no way out. Due to malnutrition, lack of medications, lack of medical care and the effects of the war, Julia is in a very bad place medically and is deteriorating. <em>She is unresponsive now and time is running out for this little girl...</em>


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<div><strong>Julia has already been granted permission from the Palestinian doctors to leave the country. </strong>But the line of those injured and sick is 100,000 long.<strong> </strong>We are working with humanitarian organizations to try to stabilize her and transport her out. Across the world, many different AHC organization members and parents of children of kids with AHC are working together to help her. <strong>There is already a fully prepped AHC expert physician in Germany who is ready to receive and treat Julia</strong>. But first they have to get out of Ga*za…


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<div><span>Funds will go</span><span> to cover hospital &amp; medical costs for Julia's treatment. Any additional funds will cover doctor appointments, food, lodging, medications, etc.</span><br />
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</div><iframe media_type="0" media_id="4uMgavLz8DI" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/4uMgavLz8DI/?rel=0" frameborder="0" allowfullscreen="1"></iframe>


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<div>Julia is suffering from lack of medication, medical care and malnutrition. She needs to be stabilized ASAP or she risks permanent paralysis and loss of skills, or death. The doctors there did everything they could before the war worsened and now there are constant bombings, no hospitals, no medications, no doctors, no food, water, or electricity. Her family lives in a tent in the main area of Rafah. Julia is deteriorating every day she remains in Ga*za.


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<div>You can see Amjad pleading for Julia’s urgent evacuation from Ga*za in this video on Al Jeezral TV news a few months ago...


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<div><a href="https://docs.google.com/document/d/1p-0hoXkZLSOM2FsnnbpI9ud65Poz_o65RmH9sYvz6eE/edit?usp=sharing" target="_blank" rel="noreferrer noopener"><strong>Click here for a transcription of the interview</strong></a><strong>. </strong>


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<div><em>Subtitles available on YouTube.</em>


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</div><iframe media_type="0" media_id="hezhRVRiM7I" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/hezhRVRiM7I/?rel=0" frameborder="0" allowfullscreen="1"></iframe>


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<div><strong>Alternating Hemiplegia of Childhood (AHC)</strong> is a cruel, heartbreaking and painful disease that incidentally does not end after childhood. It is a severe lifelong disease and it can be deadly. AHC causes paroxysmal symptoms called "episodes" that include hemiplegia, paralysis, dystonia (painful muscle spasms), seizures, and more. Episodes can last days or even weeks..... but months... that is very, very bad. 


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<div>This fundraiser was created by Izzie (Baldwin) Duval, an AHC mom &amp; advocate living in Kansas City, USA.


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<div><strong>To learn more about AHC:</strong>


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<li><a href="https://youtu.be/0qbjprd9v9Y?si=qiiJ_FLKu1Gcvn_s" target="_blank" rel="noreferrer noopener">Human Timebombs Documentary</a>


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<li><a href="https://www.youtube.com/watch?v=se6i5tD4uow" target="_blank" rel="noreferrer noopener">5 minute AHC documentary</a>


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<div><strong>AHC Foundation Websites:</strong>


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<li><a href="https://ahckids.org" target="_blank" rel="noreferrer noopener"><a href="https://ahckids.org" target="_blank" class="" rel="nofollow noopener noreferrer">https://ahckids.org</a></a>


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<li><a href="https://www.ahcuk.org" target="_blank" rel="noreferrer noopener"><a href="https://www.ahcuk.org" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.ahcuk.org</a></a>


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<li><a href="https://www.cureahc.org/about" target="_blank" rel="noreferrer noopener"><a href="https://www.cureahc.org/about" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.cureahc.org/about</a></a>


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<li><a href="https://www.hopeforannabel.org" target="_blank" rel="noreferrer noopener"><a href="https://www.hopeforannabel.org" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.hopeforannabel.org</a></a>


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<li><a href="https://www.forhenryahc.org" target="_blank" rel="noreferrer noopener"><a href="https://www.forhenryahc.org" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.forhenryahc.org</a></a>


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<div><strong>Note:</strong> <a href="https://www.gofundme.com/f/my-daughter-who-has-a-rare-disease-is-a-human-t?viewupdates=1&amp;rcid=r01-171442020257-b2783baa066111ef&amp;utm_medium=email&amp;utm_source=customer&amp;utm_campaign=p_email%2525252B1137-update-supporters-v5b&amp;fbclid=IwZXh0bgNhZW0CMTEAAR2QNmN6XbHL5nv_YAAYBje7IJUUdBGRAY1I0Onp-m76ZRztTMg1ZPMId6U_aem_AbQCHJcF_Unt_2fOw5V8aa76L1jslAM0mkTcmBd3IX1rPXtwg9JiOFytwftOss1_CT7KAqJzFBMqURjd2h--ojKj" target="_blank" rel="noreferrer noopener">An original fundraiser</a> was created by Amjad and family but we have created a new page to try to push the effort forward.


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</div><iframe media_type="0" media_id="Ndt7oFo_QtI" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/Ndt7oFo_QtI/?rel=0" frameborder="0" allowfullscreen="1"></iframe>


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Help Save Julia with AHC from Gaza

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<div>We are back again, asking for your support...
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<div>for our magical friend, Rebecca, as they fight cancer!
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<div>During the healing process from the hysterectomy surgery this summer, Rebecca went to the ER for severe abdominal pain, which resulted in a CT scan that revealed a large tumor in their chest. Rebecca was transferred to KU Med and is currently under the care of their cancer center physicians, who diagnosed Rebecca with Type B Thymoma, a rare, 1-in-a-million cancer.
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<div>The plan for recovery is extensive, as the tumor is the size of a grapefruit. The doctors have made a plan for treatment, starting with chemo -- up to 4 rounds, then surgery, possibly followed by more chemo as well as radiation. The particular chemo needed for this treatment is aggressive and brutal and...... Rebecca had to begin it on their birthday.
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<div><em>From Rebecca:</em>
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<div>"I was diagnosed with a rare cancer two weeks ago.
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<div>On June 10, three weeks after my hysterectomy, I started having severe abdominal pain. I was worried it was a complication with surgery, so I went to the ER. A CT scan didn't find anything in my abdomen, however did find a 10cm mass on the right side of my chest. 10cm = the size of a grapefruit.
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<div>My world was instantaneously turned upside down. I was transferred to KU Med and over the course of the next month and a half, I had a pulmonary function test, PET scan, and finally, a biopsy of the mass. The biopsy showed that I had a<strong> type B thymoma</strong>.
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<div>I have so much to be grateful for. I'm not in any pain. I have such an incredible support system both near and far. My therapist is awesome. I’ve been filling my days with as much joy as possible! I'm grateful... and terrified, angry, stressed, and so many other difficult emotions. My patience has never been tested like this. I've never had to advocate for myself like this. I'm unemployed. My mom died of colon cancer 3 years ago and dammit, I don't want that to be my fate any time soon. It’s really, really hard not to spiral. Please keep me in your thoughts while I'm on this journey. I need all the love and support I can get."
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<div>We are raising money to support Rebecca during this difficult time. Rebecca has been undergoing medical treatment since May, after a hysterectomy to treat Adenomyosis, a serious, invasive gynecological condition. Before Rebecca could even finish the recovery process from that surgery, the severe pain began, that led to the cancer diagnosis. Rebecca has been unable to work since May and won't be able to return to work until at least the end of the year. We want to help Rebecca through this difficult time and ease the burden of medical bills, as well as the financial toll it takes on their everyday life.
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<div>Rebecca needs help with living expenses, medical bills, and insurance payments to get through this difficult time. If you are able, please help us raise the funds needed for Rebecca's treatment &amp; recovery.
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<div>If you didn't see the first round -- check it out here: <a href="https://gofund.me/2ae344c1" target="_blank" rel="noreferrer noopener"><a href="https://gofund.me/2ae344c1" target="_blank" class="" rel="nofollow noopener noreferrer">https://gofund.me/2ae344c1</a></a>
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Support for Rebecca During Cancer Treatment

<div>On August 31st, Alexis was in a horrible car accident.  Multiple fractures to ribs &amp; sternum, head contusion,  multiple lacerations,  and a severe spinal fracture occurred.  Then later a collapsed left lung and a spinal fluid leak.
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<div>After 29 days in the hospital, she has been moved to a rehabilitation/therapy hospital.
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<div>Due to the severe injuries, she is still looking at weeks of inpatient therapy and months of outpatient therapy. 
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<div>Alexis' spinal fracture (@ L1) has caused limited movement below her hips. She will need special equipment (wheelchair, transfer equipment, etc) to return home.
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<div>Any money raised will go to medical, rehab, equipment, and recovery expenses for her. 
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<div>Thank you so much for your support!
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Help support Alexis Kelm's recovery

When my brother Ryan was 18 he was diagnosed with Acute Lymphocytic Leukemia. He fought cancer while finishing his senior year of high school and went on to study French, music, and international studies at the University of Missouri. In 2010, just as he turned 24, Ryan was rediagnosed with ALL. He underwent treatment at Barnes Jewish Hospital in St. Louis, received a stem cell transplant, and beat cancer for the second time.<br /><br />Since Ryan's transplant, he has developed graft versus host disease, which occurs when the immune cells of the transplanted tissue think the recipient's body cells are foreign and attack them. For Ryan, the symptoms showed up in his skin, liver, and lungs. For the past two years he has made the three hour drive to St. Louis every other week to receive two days of a treatment to slow the progression of the GvHD. Despite this treatment, Ryan has continued to struggle with breathing. The disease has caused scarring on his lungs which permanently decreases his lung capacity. The lung damage has put a lot of limitations on Ryan's life, but he has adjusted gracefully and continues to pursue his love of music and composition. <br /><br />On February 25th, Ryan felt unusual symptoms in his heart and went to the emergency room in Macomb, Illinois where he and his partner, Matt, are both in grad school. He was put on oxygen and waited in the ER for two days for a room to become available at Barnes. On the 27th, he was taken by ambulance to St. Louis and admitted to Siteman Cancer Center. After a few days of testing, the doctors found that he had two strains of influenza. The flu, combined with the lung damage from GvHD, made it extremely hard for him to breathe. The effort it took to breathe put a lot of strain on his heart, which was then unable to circulate enough oxygen to his body. As a result, his oxygen levels were low and his heart rate was extremely fast. Those two problems worked in a vicious cycle, each making the other worse. <br /><br />Over the next two and a half weeks, Ryan's condition gradually declined. He was transferred in and out of intensive care twice before being admitted to the ICU for the third and final time on March 15th. A week later on March 22nd, the team at Siteman decided Ryan's heart was the main concern at that point and he was transferred to the cardiac ICU on a different part of the hospital campus. The move was difficult and Ryan continued to struggle more and more with breathing. Each breath took an incredible amount of energy and he was exhausted. Two days after the move he couldn't keep his oxygen levels high enough on his own anymore and he had to be put on a ventilator. Ryan was sedated, intubated, and given a feeding tube through his nose. While the prospect of intubation was scary, the procedure went smoothly and the ventilator, by breathing for him, allowed Ryan's body to rest for the first time in weeks. His heart rate, which had previously hovered around 160 beats per minute, slowed to a near normal rate in the 80s. His oxygen levels and blood pressure were good and things were proceeding well. The next step was to put in a tracheostomy. He would remain on the vent, but instead of going in through his mouth, the tube would go in though his throat so he could be taken off sedation and start the slow process of coming off the ventilator. <br /><br />Since the trach and a new surgically implanted feeding tube were put in on March 30th, there have been a few setbacks and progress has been difficult. On the night of April 6th, the surgeons put in a new trach in a smaller size, which fits Ryan better and seems to be making a positive difference. He has started physical and occupational therapies to get his strength back and will hopefully start to be weaned off the ventilator soon. We're determined not to have anymore setbacks and expect that Ryan will continue to get strong and healthy again, but the road to recovery will be long and difficult. When Ryan is strong enough, he will go to a pulmonary rehabilitation facility where he will work with a wide array of specialists who will help him get back to a point where he can function day-to-day.<br /><br />Ryan and Matt are both graduate students and have assistantship positions which help them pay for tuition and living expenses. Ryan also works as the handbell choir director at a church in Macomb. The past six weeks of hospitalization have prevented Ryan from finishing the current semester and it will be many months before he is able to go back to work. Even then, the jobs that Ryan is able to do may be more limited than they already were. The loss of half their income combined with the expenses of hospitalization, rehabilitation, and ongoing care will be extremely taxing on Ryan and Matt financially. During this time, many friends, family members, acquaintances, and even strangers, have asked what they can do to help. Ryan, Matt, my parents, and I have everything we need during this time in the hospital, but we want to make sure Ryan and Matt can pay their bills and have financial stability when Ryan finally returns home. We would all be overwhelmingly grateful for any contribution you are able to make to help Ryan and Matt focus on Ryan's health rather than managing to pay the bills. <br /><br />As Ryan approaches his 30th birthday this summer, it is safe to say he has fought longer and harder than most people twice his age. He is the strongest person many of us have ever known. He has always been the big brother I look up to, who inspires me, teaches me, and pushes me forward. I knew he was strong. I knew his will to live a full and creative life was solid. But watching him struggle through this nightmarish ordeal has me searching for a superlative that doesn't exist. I can no longer put into words my amazement at my brother's fortitude. In the words of his oncologist, "he is an inspiration to us mere mortals". Thank you all for your thoughts and prayers of strength and healing and your tremendous kindness during this incredibly difficult time. It means the world to all of us. <br /><br />With love and eternal thanks,<br /><br />Alie McNeil

Ryan's Recovery Fund

Izzie Duval

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Izzie Duval

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Highlights

A Treatment for Henry

Help Save Julia with AHC from Gaza

Support for Rebecca During Cancer Treatment

Help support Alexis Kelm's recovery

Ryan's Recovery Fund

Activity