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There are so many of us who know and love Sunny & Theirry, so we wanted to start this Go Fund Me as a way to support them through this journey.
In June 2020, their son Zephyr was diagnosed with Adrenoleukodystrophy (ALD) and since then they've been working so hard to find the best treatment for him. After many visits to Children's Hospital in Denver, in February 2021, Sunny & Zephyr spent two weeks at Stanford Medical Center learning more about a potential gene-therapy treatment that Zephyr ultimately qualified for. This April, Sunny and Z will head back to California for 2 months so Z can receive treatment. We want to support them as they take on this difficult next step.
The coming months will continue to be challenging for the family. They will be navigating the medical world and making unbelievably hard decisions, taking on additional living and food expenses in California and most importantly, they will be separated as a family when they need each other the most.
As the medical bills continue to pile up and the stress of everyday living takes a toll on them, we hope you consider donating to their fund. Please help provide the family with warm meals, a comforting place to stay in California, a few self-care essentials and the financial means to pay some bills so they can focus all of their attention on sweet little Z.
Thank you for offering whatever you can donate at this time.
Below is Sunny's Facebook post from April 1, 2021:
Friends,
This is a tough post for me to write, but I can’t put it off any longer. It is time for me to face some intensely scary and unpredictable times, and I need your support, love, inspiration and wisdom to help me get through it.
In June, my son Zephyr was diagnosed with adrenoleukodystrophy (ALD). I know! I had never heard of it either, so it came as a complete shock! Three sentences into my google search, my world started caving in - “In most cases, ALD proves fatal within two to five years of the development of symptoms.” Fortunately, Zephyr’s MRI showed only the smallest indication of disease progression and he was still outwardly symptom-free, so the race was on to find a treatment.
Over the last few months, Zephyr has endured numerous blood draws and lengthy examinations, and he has been an incredibly good-natured and tolerant patient. Through the process we learned that he has some pretty rare genes and is, therefore, not a great candidate for a bone-marrow transplant, which is the current standard of care for ALD. The incredible folks at Children’s pointed us in the direction of an experimental gene-therapy treatment currently being studied at Stanford, so Zephyr and I paid them a visit in late February to learn more, and undergo an intense screening process.
Once they determined that he was a good candidate for their study, we moved forward quickly. His stem cells were removed via a process called apheresis. He had a severe reaction to a chemical that they used to prevent his blood from coagulating. It was horribly scary and painful for both of us, but thankfully they were able to collect everything that they needed before the machine was turned off. His cells are currently being modified in a lab (the science behind this is amazing!) and we will return to Palo Alto on April 10th to begin preparations for the infusion.
He will need to undergo four days of chemotherapy to prepare his body to accept the modified stem cells. Then once the infusion is complete, we wait. We expect to be in residence at Lucile Packard Children’s Hospital for at least three to four weeks for monitoring and to protect his fragile immune system. Then we will move to a local hotel and he will be an outpatient for a few weeks. If all goes well, we will be able to come home in early June and enjoy a “relatively normal covid summer” filled with safely-masked and socially-distanced, outdoor adventures.
While it feels surreal and deeply uncomfortable to submit our sweet boy, who on the surface looks and acts like any other six-year-old, to such an invasive and unpredictable procedure, we really don’t have a good alternative. If we wait, the disease may progress in a quick and irreversible way, so we believe that this is his best chance at a healthy life.
If you are inclined toward sending healing thoughts or prayers, I will take them! Please visualize my sweet Zephyr moving through this journey with a sense of ease, curiosity and trust. Picture his body accepting the modified cells and swiftly learning how to metabolize very long-chain fatty acids. Picture him learning some complex life lessons with his positive attitude and sense of humor intact. Picture him finding the words to express what he is feeling and share what he is going through. Picture him proud of his scars and confident in his body. Picture him skipping off to first grade in August with his best buddy and twin sister, Zia, by his side.
Speaking of Zia, my heart breaks thinking about being away from her for two months. She is a strong, independent force of nature and I know that she will be fine without me, but I will miss her signature hugs, laughter and sass profoundly and viscerally. Please picture her heart remaining open, void of resentment and jealousy toward her brother and me for our extended absence--which she still pictures as a beach vacation. Picture her developing a deep sense of compassion for her brother’s unique circumstances, while at the same time, developing an appreciation for her own unique gifts and opportunities. Picture her enjoying the space that has been created in her life to discover a new side of herself and develop new friendships. Picture her learning that my love is always surrounding her even when I am far away. Picture her running into my arms when I return, full of colorful, exciting stories to share.
And my love, Thierry. I can’t imagine the anguish of being so far from a beloved child who is going through such big challenges. But that's what you do when Covid (no siblings allowed) and a full-time job (lord, we need that health insurance) limit your options. That’s what you do when you are the family’s rock! Please picture him at peace, feeling calm and grounded in the knowledge that Zephyr is receiving the best possible care. Picture his heart being filled up with Zia’s abundant adoration and affection. Picture him finding time to perfect his paper-airplane skills so that he and Zephyr can set new records when we return.
Me--where do I start? Please picture me conjuring up the stamina, intelligence and confidence to be an effective advocate for Zephyr throughout this process--because we have already learned that even the most prestigious medical systems are vulnerable to miscommunication and other potentially dangerous oversights. Please picture me accessing an infinite supply of patience, creativity and compassion as I try to entertain and comfort a boy with infinite questions and energy--in a very small space. Please picture me finding some time to walk in nature, sit quietly with my breath and my emotions, and drink enough water everyday. Please picture me having the humility and grace to know when I need help and to ask for it-- generally not my strong suit.
It has been a rather private and lonely journey so far, thanks to the social barriers of Covid and so many unknowns. It feels good to finally have a clear trajectory mapped out, and a coherent story to share with my cherished friends and family. Thank you for listening, for caring, and for helping me manifest this vision!
With gratitude and hope,
Sunny
In June 2020, their son Zephyr was diagnosed with Adrenoleukodystrophy (ALD) and since then they've been working so hard to find the best treatment for him. After many visits to Children's Hospital in Denver, in February 2021, Sunny & Zephyr spent two weeks at Stanford Medical Center learning more about a potential gene-therapy treatment that Zephyr ultimately qualified for. This April, Sunny and Z will head back to California for 2 months so Z can receive treatment. We want to support them as they take on this difficult next step.
The coming months will continue to be challenging for the family. They will be navigating the medical world and making unbelievably hard decisions, taking on additional living and food expenses in California and most importantly, they will be separated as a family when they need each other the most.
As the medical bills continue to pile up and the stress of everyday living takes a toll on them, we hope you consider donating to their fund. Please help provide the family with warm meals, a comforting place to stay in California, a few self-care essentials and the financial means to pay some bills so they can focus all of their attention on sweet little Z.
Thank you for offering whatever you can donate at this time.
Below is Sunny's Facebook post from April 1, 2021:
Friends,
This is a tough post for me to write, but I can’t put it off any longer. It is time for me to face some intensely scary and unpredictable times, and I need your support, love, inspiration and wisdom to help me get through it.
In June, my son Zephyr was diagnosed with adrenoleukodystrophy (ALD). I know! I had never heard of it either, so it came as a complete shock! Three sentences into my google search, my world started caving in - “In most cases, ALD proves fatal within two to five years of the development of symptoms.” Fortunately, Zephyr’s MRI showed only the smallest indication of disease progression and he was still outwardly symptom-free, so the race was on to find a treatment.
Over the last few months, Zephyr has endured numerous blood draws and lengthy examinations, and he has been an incredibly good-natured and tolerant patient. Through the process we learned that he has some pretty rare genes and is, therefore, not a great candidate for a bone-marrow transplant, which is the current standard of care for ALD. The incredible folks at Children’s pointed us in the direction of an experimental gene-therapy treatment currently being studied at Stanford, so Zephyr and I paid them a visit in late February to learn more, and undergo an intense screening process.
Once they determined that he was a good candidate for their study, we moved forward quickly. His stem cells were removed via a process called apheresis. He had a severe reaction to a chemical that they used to prevent his blood from coagulating. It was horribly scary and painful for both of us, but thankfully they were able to collect everything that they needed before the machine was turned off. His cells are currently being modified in a lab (the science behind this is amazing!) and we will return to Palo Alto on April 10th to begin preparations for the infusion.
He will need to undergo four days of chemotherapy to prepare his body to accept the modified stem cells. Then once the infusion is complete, we wait. We expect to be in residence at Lucile Packard Children’s Hospital for at least three to four weeks for monitoring and to protect his fragile immune system. Then we will move to a local hotel and he will be an outpatient for a few weeks. If all goes well, we will be able to come home in early June and enjoy a “relatively normal covid summer” filled with safely-masked and socially-distanced, outdoor adventures.
While it feels surreal and deeply uncomfortable to submit our sweet boy, who on the surface looks and acts like any other six-year-old, to such an invasive and unpredictable procedure, we really don’t have a good alternative. If we wait, the disease may progress in a quick and irreversible way, so we believe that this is his best chance at a healthy life.
If you are inclined toward sending healing thoughts or prayers, I will take them! Please visualize my sweet Zephyr moving through this journey with a sense of ease, curiosity and trust. Picture his body accepting the modified cells and swiftly learning how to metabolize very long-chain fatty acids. Picture him learning some complex life lessons with his positive attitude and sense of humor intact. Picture him finding the words to express what he is feeling and share what he is going through. Picture him proud of his scars and confident in his body. Picture him skipping off to first grade in August with his best buddy and twin sister, Zia, by his side.
Speaking of Zia, my heart breaks thinking about being away from her for two months. She is a strong, independent force of nature and I know that she will be fine without me, but I will miss her signature hugs, laughter and sass profoundly and viscerally. Please picture her heart remaining open, void of resentment and jealousy toward her brother and me for our extended absence--which she still pictures as a beach vacation. Picture her developing a deep sense of compassion for her brother’s unique circumstances, while at the same time, developing an appreciation for her own unique gifts and opportunities. Picture her enjoying the space that has been created in her life to discover a new side of herself and develop new friendships. Picture her learning that my love is always surrounding her even when I am far away. Picture her running into my arms when I return, full of colorful, exciting stories to share.
And my love, Thierry. I can’t imagine the anguish of being so far from a beloved child who is going through such big challenges. But that's what you do when Covid (no siblings allowed) and a full-time job (lord, we need that health insurance) limit your options. That’s what you do when you are the family’s rock! Please picture him at peace, feeling calm and grounded in the knowledge that Zephyr is receiving the best possible care. Picture his heart being filled up with Zia’s abundant adoration and affection. Picture him finding time to perfect his paper-airplane skills so that he and Zephyr can set new records when we return.
Me--where do I start? Please picture me conjuring up the stamina, intelligence and confidence to be an effective advocate for Zephyr throughout this process--because we have already learned that even the most prestigious medical systems are vulnerable to miscommunication and other potentially dangerous oversights. Please picture me accessing an infinite supply of patience, creativity and compassion as I try to entertain and comfort a boy with infinite questions and energy--in a very small space. Please picture me finding some time to walk in nature, sit quietly with my breath and my emotions, and drink enough water everyday. Please picture me having the humility and grace to know when I need help and to ask for it-- generally not my strong suit.
It has been a rather private and lonely journey so far, thanks to the social barriers of Covid and so many unknowns. It feels good to finally have a clear trajectory mapped out, and a coherent story to share with my cherished friends and family. Thank you for listening, for caring, and for helping me manifest this vision!
With gratitude and hope,
Sunny
Organizer and beneficiary
Sunny Klaber VanderStar
Beneficiary