I have a rare hereditary neurological condition, dopa-responsive dystonia. The symptoms began when I was about five and after being seen by dozens of doctors and a range of healers, the condition was diagnosed by a team at NIH when I was eleven. They started me on a medication called Sinemet, normally given to people with Parkinson’s disease. I was amongst the very first child to be given this drug in the United States. For twenty years I took it daily and the side effects as it built up in my body were truly killing me. I am now thirty-nine.
I am an artist and explorer who has faced this debilitating illness and learned to THRIVE despite the odds. So I began to research and explore the possibilities for an alternate to Sinemet, though the medical community indicated that there were no effective options. Just over five years ago I stopped taking Sinemet completely, having worked on a protocol of natural supplements, diet and exercise. My experience of life is so much better, but the effort to overcome the symptoms is a daily challenge that requires great strength and conviction. Over the years I have learned more and more, adjusted my daily regime and have boosted my lifestyle from being wheelchair bound to embracing the ever-changing dance of life and am ready to share what I am experiencing and learning with people who have dystonia.
There now appears to be a potential for a cure or at least a far more effective way to provide long term relief through a careful use of specialized Stem Cell Therapy, refined for neurological conditions. This is the next vital step that I want to try and share with others. This is the reason I am asking for your help.
I want to take the last eight years of alternative treatment experience -- and the 20 years before that and share with you all the ways I have changed and grown through the challenges of being labeled physically and mentally disabled.
As a devoted, activist artist and photographer I have a platform for this expression and a wide network of influential friends and champions. It is my lifelong dream to struggle, learn, rise up, and broadcast to the best of my ability, the fruits of these ongoing efforts to heal. There are over a million of us just in the United States striving to be free of neurological conditions like dystonia and Parkinson’s.
I am willing to take any risk -- as long is it is calculated and moving in the direction of positive change and progress. That is why after ten years of searching high and low and a long journey of trial and error I am ready to reach out and ask you to join me on the final leg of this journey!
I am trying to get the best treatment I know to be available at this time. It is advanced and grounded in strong results. I want to take you on the journey with me -- so that you can know all that I have experienced so far and what the effects of this particular Stem Cell treatment are.
Let’s take this path together. It is way better in so many ways to be strong from foods and nutrients rather than managing symptoms with drugs. The drugs were killing me with side effect after side effect -- now I am over 5 years FREE! & ready for the next quantum leap...
I thank you a million times over for your support in helping me achieve and share the results of advanced Stem Cell treatment for dystonia. I am so close! Thank you for helping me make this dream a reality. I promise to give back a lifetime of passion for the greater good. Thank you for your love and support and bless each step of your personal journey.
What We Need
$30,000 - Stem Cell treatment optimized for dystonia
$3,000 - Travel and lodging for the 12 days at the clinic
$5,000 for NAD treatment in the US after the Stem Cell treatment
$5,000 for Recording, Editing & Production expenses
Other Ways You Can Help
● Please get the word out and if you know people in the media please share this campaign. There is a story to be told here!
● If you know those who collect art that is another path of sharing.
● Please use the all social media share tools!
● Thank you & thanks some more...
Explore more: www.laylaloveart.com
This site offers a gallery of my work and the images are available for sale. If you purchase art in support of this campaign I offer a 20% discount. Use the code word "rise" at checkout.
Letter from a Mother:
When my daughter, Layla, was just 11 years old she was diagnosed with dopa responsive dystonia (DRD). This came after many years of searching for answers.
It is a rare form of hereditary dystonia. When she was diagnosed little was know about the condition. Doctors had however recently determined that Sinemet, the medication that is given to people with Parkinson's disease, helped control the shaking and spasms she experienced. DRD is similar to Parkinson's disease. Layla was one of the first children in America to be given this medication.
Over the years the medicine’s side effects were noticeably having an adverse effect on Layla's health, both mentally and physically. There were many hospital visits to critical care and the emergency room. The condition also threatened her vision, she was diagnosed with multifocal choroiditis which can quickly lead to blindness. As a visual artist and photographer, Layla was devastated to hear this.
At this time she decided to do something she was told was not possible by the doctors who had treated her, give up taking the Sinemet. However, with her pioneering spirit, she did, by herself, she has now been off Sinemet for 5 years. She has found a combination of natural supplements that have worked well but without the serious side effects.
While living with this constant condition, which causes pain, spasms, rigidity and affects her life in so many ways, she has developed her gift and talents as an amazing artist, wordsmith and photographer. Her artwork has been featured with shows in New York, Los Angeles, Miami and London.
Layla is now pioneering again. She is looking for a CURE, to end the ongoing pain and to have the level of energy and freedom of movement in her body she has not yet experienced, not worry about the potential of losing her sight, this time using stem cells. Stem cells therapy offers so much hope for so many conditions but there is a need for more research.
As yet not a lot is known about the success of stem cells in Parkinson's/dystonia, but the research that Layla has done it seems that the benefits are growing and they are curing diseases thought to be incurable.
This is Layla’s way of contributing to a better quality of life both for herself and others who follow in the same direction. Her goal is in helping herself she will help others, there is so much potential in this treatment. Someone has to go first, Layla is going first so that others can benefit from the results.
Help is need to support Layla in this time. It will take a time to do the treatments and to recover. These are costly treatments at this time but the results could be far-reaching for those people with these conditions. Throughout the years Layla developed her talent as an award winning photographer and artist. She is offering her work and making it available to help fund this venture.
About the treatments:
The treatments are truly experimental at this time and are not allowed in the US. The recommendation for treatments came from conversations with Dr. John Gray (author of Men are from Mars, Woman are from Venus), who also has a degenrative neurogical condition that he is treating in a simiar way, Dr. Beth Macdougall, a specialist in Neurodegenerative Disease and Nassim Haramein.
The stem cell treatments are administered at the clinic of Dr. Hiro in Ensenada, Mexico. This experimental treatment is being overseen by Dr. Hiro.
She is documenting her journey as a way of getting the word out to others about this journey of healing and to bring her experience to others so that they can benefit. Her quest is unending, but now, hopefully, there will be a positive outcome for one and for many others.
- Ibi and Booth Hinrichs and Dyess
- Alan MacLeod
- Anne Mattison
Organizer and beneficiary
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