The Marley Brown Care Fund

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The Marley Brown Care Fund

This nonprofit was created in memory of our beautiful daughter Marley Ellen Brown. Raise awareness for Moebius Syndrome in Canada and around the world. ie.

To directly help and support others in her name and make a difference in the lives of so many families. To provide direct financial support for local and international families that have a child with complex medical needs and to help with the cost of medical equipment that these complex children need. Feeding pumps and feeding tube supplies, suction machines, tubing accessories, wheelchairs, stand

ers, orthotics for children born with differences. To raise awareness and educate about Moebius Syndrome in Canada and around the world. To donate a portion of all funds raised to "The Patient Abilities Fund" at the Hospital for Sick Children in Toronto, ON. Canada.

01/24/2024

Happy Moebius Syndrome Awareness Day!!! 💜💜💜 Wear Purple in memory of Marley today!!!

07/19/2023

It’s almost her birthday!!! I can’t believe she would have been 10 years old this year! We miss her so much and she is forever in our hearts! 💜💜💜Happy Heavenly Birthday Mar- Mar! We are hosting this campaign as part of her birthday celebration! So choose a patch that reminds you of her and we will add them all to her TSH Cape! Thank you for all your support and love for Marley!!!! Let fill up her superhero cape together!!!🙌💕💯

06/26/2023

Well another year has passed and it was the Annual Sick Kids Hospital Butterfly Release Memorial on Saturday, June 24th/ 2023! I honestly cannot believe it’s been 7 years since she passed. This is such an important and incredible event for families to participate in as they get to remember and share their child’s life with those that have walked in their shoes. They may be newly bereaved or many years have passed but one thing we all have in common is that our child was here and that will never change. We are the keeper of our child’s memory and that is a very important role to have! Helping others in our daughters memory is her legacy and it allows her love to keep going even though she is no longer physically here on this earth. Such an important part of our grieving process as a family... losing a child is devastating there are no words or description to express just how much it changes your everyday, but knowing that we do not walk this alone means the world to us and keeping Marley’s memory alive means the world to me! 💜💜💜

01/25/2022

Happy Moebius Syndrome Awareness Day to my daughter in heaven! My days will never be the same but I’m so thankful for you and all that you taught me about this rare neurological condition! Go to our website to check out Marley’s story! 💜💜💜
www.themarleybrowncarefund.com

11/21/2021

Some days I feel like I’m conquering this grief by remembering you and others I feel as if I’m starting this grief journey all over again… but it’s all I can do to keep going and to make you proud sweetheart. Yesterday was Marley’s Annual Candlelight Service with , it was virtually done this year as well because of the pandemic. It’s still such a bittersweet service. I’m thankful that I had her for almost 3 years, but still wonder what she would be doing now. Miss you Marley sooo much. Momma loves you to the moon and back! 💜💜💜

Address

Milton, ON

Telephone

9057833800

Website

http://www.themarleybrowncarefund.com/

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MARLEY ELLEN BROWN

This page is dedicated in memory and in honor of my daughter Marley. Marley was diagnosed with a rare neurological condition shortly after birth called Moebius Syndrome. What is Moebius you may ask? Moebius syndrome is a rare neurological condition that primarily affects the muscles that control facial expression and eye movement. Signs and symptoms of the condition may include weakness or paralysis of the facial muscles; feeding, swallowing, and choking problems; excessive drooling; crossed eyes; lack of facial expression; eye sensitivity; high or cleft palate; hearing problems; dental abnormalities; bone abnormalities in the hands and feet; and/or speech difficulties. Affected children often experience delayed development of motor skills (such as crawling and walking), although most eventually acquire these skills. Moebius syndrome is caused by the absence or underdevelopment of the 6th and 7th cranial nerves, which control eye movement and facial expression. Other cranial nerves may also be affected. There is no cure for Moebius syndrome, but proper care and treatment give many individuals a normal life expectancy.

Is Moebius Syndrome genetic?

Most cases of Moebius syndrome are sporadic, which means they occur in people with no history of the disorder in their family. A small percentage of all cases have been reported to run in families; however, the condition does not have a single clear pattern of inheritance.

Why am I so passionate about raising awareness?

Yes of course I am her mother and dealing with the loss of her has been the hardest thing that I have ever faced. I thought her diagnosis was hard. I had no idea. Marley was an extraordinary little girl. She continued to prove the doctors and specialists wrong, as to what her capabilities would be. Every single follow-up appointment that we went to, she amazed her entire team! She was a fighter until the very end and I believe that if the doctors and nurses at the hospital were aware of her syndrome on that fateful day and the complications surrounding it, she would still be with us. I want to make sure that no other families have to go through the loss of a child, because of a rare condition. Its so important that these doctors and nurses realize that they need to start listening to the parents of these special children. I knew her best! I knew everything about her. I knew her schedule, her capabilities, I was her care-giver 24 hours a day, 7 days a week!

How can I help you may ask?

Of course our goal is to raise funds for Sick Kids Hospital in Toronto, Ontario- for the genetic research and support in Marley’s name. But if you can’t donate then educate! Tell one person a day what Moebius syndrome is. Together we can educate and raise awareness for this rare condition in Canada and around the world. Moebius Syndrome Awareness Day is an annual event celebrated globally each year on January 24th — the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the condition in 1888. On that day, wear purple to support Marley and every one that is affected by this rare condition! If you would like to donate, the link for her fundraising page can be found here. https://www.sickkidsdonations.com/registrant/FundraisingPage.aspx?RegistrationID=3588133#&panel1-2

Thanks so much for taking the time to visit my page. Together we can raise awareness!