Help Madalyn & family to New York
Donation protected
Madalyn and her family have the opportunity to travel to New York in July for a Bainbridge-Ropers Syndrome "Family Meeting" . Madalyn will be able to meet kids that are just like her, Which is huge given very few people in the world have this. ( When Madalyn was diagnosed in 2016 at age 11, she was only around the 30th person diagnosed in the world. ) However with research, and more testing of children, as well as meetings like these it will help so many other parents who don't know what makes their child extra special, have a place to fit in and receive answers , and support from others that know the trials they endure.
This will also be huge for Madalyn's Parents Matt & Suzanne, to be able to talk with others on the many challenges of Bainbridge-Ropers. Below is in excerpt from Suzanne's Facebook post to Madalyn's Diagnosis and what it meant
"We've spent the last several days scrolling through and reading most all of your posts. We've laughed, we've cried and relived so many memories this weekend sharing in your joys and heartaches. They've reminded us of where we have been. Wow! What a journey it has been and continues to be!
Watching the mannerisms of posted videos and seeing similarities in pictures has been so wonderful after not having the support that comes from knowing and feeling like you are often on an island. Enjoying the similarities of being water obsessed, the "Stevie Wonder" head sway, the hand flapping and out burst of laughter are all things we enjoy as well.
Even having the peace of mind that the struggle is somewhat the same from challenges that come with being non verbal, severe developmental and global delays, self harming, obsessive compulsive behavior, tics, involuntary movements, ear infections, GI issues, hearing and vision impairments, early puberty and more.
It's nice to be able to have a place where our daughter has more in common than not. Having this diagnosis after 11 years of wondering just feels like we now have a place to belong.
We are looking forward to connecting with all of you!"
Not only do they have a chance to connect, but to also meet the leading Dr.s who are specializing and researching BRS and meet with them one on one, what a blessing. The Cost is weighing on them wanting to go, and I know this will be very healing for them. I will close again with my sisters words on a FB post ( because she is a lot better then me at speaking and writing)
"My husband and I have been discussing the possibility of attending the gathering in New York, as I’m sure many of you have been. I find myself really wanting to go and then being completely overwhelmed.....the finance piece is a huge factor, the thought of the plane ride (Where do you change a 12 year olds diaper?), and Heaven help her and us when she can’t line up all her baskets and broken sit and spin at bed time (yes she is obsessive ). Most of all I worry about her behaviors and the stress they cause her.
In __________name left out for privacy____ post last week he said “But what I learned in talking to dozens of people on the science/research/medical side, is that with rare (ie. Orphan) diseases, the MOST IMPORTANT thing we can do is bring as many of our community together as possible, as quickly as possible, and as often as possible. This is so we can both learn and teach. With such a small number of children in the BRS community, the medical/research community has no way of collecting all the information they need, and in most cases, the limited information available isn’t compiled in a usable, scientific way. Without this information, researchers won’t be as inclined to study BRS, which in turn means that the idea of a long term solution for our children becomes less likely.”
This is true and while I’m still not sure we will find ourselves going to New York for this gathering I do know we have to keep asking the questions and sharing. Sharing is something I haven’t been the best at. I look at the parents that are just starting on this journey and say to my husband “Remember when we were like that....” now 12 years later....I will never stop being an advocate for our precious daughter or fighting the fight for her but I have gotten tired in this journey that has felt like a separate lifetime. But __________ words spoke to me if for no other reason to keep sharing and talking.
Last night I took the following video for her doctors and while it is one of the reasons (her behaviors) that weigh heavy on my heart not to go as I watched it today with tears in my eyes the thought came to me - This is the reason you should go, as hard as it is this is what people need to see and know. And while I don’t want to post the ugly side inside our world I know it is what many of us do, have or will go through.
So whether you go or not all of us are in this together for our sweet spirits and I’m glad we have each other and a safe place to share our crazy, chaotic lives."
*Video not shared on go fund me for privacy reasons
As you can see this will mean the world to their family, and if you don't have the means to donate, Please keep them in your thoughts and prayers as it will be a different JOURNEY of its own traveling with Madalyn :)
This will also be huge for Madalyn's Parents Matt & Suzanne, to be able to talk with others on the many challenges of Bainbridge-Ropers. Below is in excerpt from Suzanne's Facebook post to Madalyn's Diagnosis and what it meant
"We've spent the last several days scrolling through and reading most all of your posts. We've laughed, we've cried and relived so many memories this weekend sharing in your joys and heartaches. They've reminded us of where we have been. Wow! What a journey it has been and continues to be!
Watching the mannerisms of posted videos and seeing similarities in pictures has been so wonderful after not having the support that comes from knowing and feeling like you are often on an island. Enjoying the similarities of being water obsessed, the "Stevie Wonder" head sway, the hand flapping and out burst of laughter are all things we enjoy as well.
Even having the peace of mind that the struggle is somewhat the same from challenges that come with being non verbal, severe developmental and global delays, self harming, obsessive compulsive behavior, tics, involuntary movements, ear infections, GI issues, hearing and vision impairments, early puberty and more.
It's nice to be able to have a place where our daughter has more in common than not. Having this diagnosis after 11 years of wondering just feels like we now have a place to belong.
We are looking forward to connecting with all of you!"
Not only do they have a chance to connect, but to also meet the leading Dr.s who are specializing and researching BRS and meet with them one on one, what a blessing. The Cost is weighing on them wanting to go, and I know this will be very healing for them. I will close again with my sisters words on a FB post ( because she is a lot better then me at speaking and writing)
"My husband and I have been discussing the possibility of attending the gathering in New York, as I’m sure many of you have been. I find myself really wanting to go and then being completely overwhelmed.....the finance piece is a huge factor, the thought of the plane ride (Where do you change a 12 year olds diaper?), and Heaven help her and us when she can’t line up all her baskets and broken sit and spin at bed time (yes she is obsessive ). Most of all I worry about her behaviors and the stress they cause her.
In __________name left out for privacy____ post last week he said “But what I learned in talking to dozens of people on the science/research/medical side, is that with rare (ie. Orphan) diseases, the MOST IMPORTANT thing we can do is bring as many of our community together as possible, as quickly as possible, and as often as possible. This is so we can both learn and teach. With such a small number of children in the BRS community, the medical/research community has no way of collecting all the information they need, and in most cases, the limited information available isn’t compiled in a usable, scientific way. Without this information, researchers won’t be as inclined to study BRS, which in turn means that the idea of a long term solution for our children becomes less likely.”
This is true and while I’m still not sure we will find ourselves going to New York for this gathering I do know we have to keep asking the questions and sharing. Sharing is something I haven’t been the best at. I look at the parents that are just starting on this journey and say to my husband “Remember when we were like that....” now 12 years later....I will never stop being an advocate for our precious daughter or fighting the fight for her but I have gotten tired in this journey that has felt like a separate lifetime. But __________ words spoke to me if for no other reason to keep sharing and talking.
Last night I took the following video for her doctors and while it is one of the reasons (her behaviors) that weigh heavy on my heart not to go as I watched it today with tears in my eyes the thought came to me - This is the reason you should go, as hard as it is this is what people need to see and know. And while I don’t want to post the ugly side inside our world I know it is what many of us do, have or will go through.
So whether you go or not all of us are in this together for our sweet spirits and I’m glad we have each other and a safe place to share our crazy, chaotic lives."
*Video not shared on go fund me for privacy reasons
As you can see this will mean the world to their family, and if you don't have the means to donate, Please keep them in your thoughts and prayers as it will be a different JOURNEY of its own traveling with Madalyn :)
Organizer and beneficiary
Shelley Collins- Dach
Organizer
Spokane, WA
Suzanne Dach
Beneficiary
