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We need a village!! Help MECP2 Duplicate Syndrome!

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Hi, my name is Jamie Willett, I'm humbly asking for your help in fundraising for medical expenses, assisted in home care, therapy, and a treatment or cure for my 4 year old twin boys, Otis and Arlo. Any amount helps! They have a rare X-linked genetic disorder called MECP2 Duplicate Syndrome. It causes severe intellectual delays and chronic medical conditions.



Some of the main medical issues that onset due to MECP2 Duplicate Syndrome are chronic upper respiratory illness, severe GI Issues, failure to thrive, Scoliosis, incurable epilepsy, feeding difficulties, sleep apnea. limited mobility. This disease progresses and can devestatingly lead to an early death. My boys have been in and out of the hospital since they were 1 yrs old. They see over 10 specialists at Childrens Milwaukee and currently deal with severe GI issues, chronic upper respiratory, feeding difficulties, sleep apnea and limited mobility. It's just a matter of time that seizures onset and progressively take over their health.



My boys are my world. I'm a single Mom who advocates and fights tiressly for them. We can't get all the resources we need. I work closely with County Child Long Term Service Waiver and advocate hard to get the services we need. Unfortunately state funding is substantially low for personal care workers at $11. No one will work for $11. Because of this theres a statewide crisis of personal care workers. Important county and state resources in place arent accessibile. I've exhausted all county and state resources.



Additionally, I'm unable to work because of their severe condition. Many daycares aren't equipped for children with such severe special needs including medical. We are faced with multiple obstacles and barriers within the system.







All I want is to beable to care for Otis and Arlo and keep them safe. As they've become older it's become increasingly more difficult to care for them and all their special needs. The level of difficulty will only progress as additional medical issue's onset and worsen. Sadly but realistically I must admit its too much for me, their Mom, to do on her own. So much of this funding would go to future medical expenses and assisted in home care, so I can keep them home where they belong. No parent should ever have to think they can't provide or support for their children but this devastating disease has lead me to possibly consider foster/adoption. I want my boys. I want them in my home with me. I will fight for them until I can't anymore.



My little brother was a fighter too. Jimmy passed away from MECP2 Duplicate Syndrome in January. He was 33. My parents struggled to care for him as his medical conditions worsened. I know if two parents struggled with one MECP2 child, the odds are really stacked against me. But not if I find my village, gathering community, family and friends, friends of friends to bless me in my journey with these two very special boys. I'm praying for a village.



I'm praying for a treatment or cure.

Some of this help received will go towards a treatment or cure for MECP2. A curative treatment has been approved by the FDA but funds are needed to get this medicine to clinical trials. As of right now, there is hope for treatment, a trial is on its way called ION440, this and other therapies are in the works. Unfortunately, funding for a cure is solely dependent on MECP2 families fundraising efforts. Besides caring for medically complex children with such a rare disorder it's up to MECP2 family and friends to gather community to raise money for a cure.



These boys deserve a village. They deserve to live a life with as much support as possible. They've gone through so much already and I know with your help it'll get us through the rough path that lies ahead. Thank you for taking the time to read about our fight against MECP2 Duplicate Syndrome.



Again, we are so grateful and blessed to have your support. Thank you for your compassion and empathy through such a very difficult time in my life. Any amount of help is appreciated. My boys and I are forever grateful. We are praying for a village.







MECP2 Duplicate Syndrome

The MECP2 gene provides instructions for making a protein called MeCP2 that is critical for normal brain function. Researchers believe that this protein has several functions, including regulating other genes in the brain by controlling when they are able to participate in protein production. An extra copy of the MECP2 gene leads to the production of excess MeCP2 protein and an increase in protein function. The resulting changes in gene regulation and protein production in the brain lead to abnormal nerve cell (neuronal) function. These neuronal changes disrupt normal brain activity, causing the signs and symptoms of MECP2 Duplicate Syndrome.

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Organizer

Jamie Willett
Organizer
De Pere, WI

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