Brendan: Walking and Talking about the Journey with WS
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- Опубліковано 5 жов 2024
- Brendan, who was one of our "grand marshalls" for our #Walk4Williams, walked with his mom this weekend and they captured their insightful conversation about life with WS: as he says, "Let's walk and talk." Give it a watch! Brendan is on our board of trustees and he's a musician who is living a full life.
Beautiful
#WSA💙💚❤ #TeamJaxonNC
GREAT VIDEO..... KEEP SPREADING KNOWLEDGE AND JOY😁💫
Thank you so much Kym. you got it :)
@@brendanlemieux6039Brendan , I don't know where to start , we know my much older sister was misdiagnosed decades ago and that is so obvious she has Williams syndrome that even years ago when I contacted the genetics department at Jefferson Hospital Philadelphia and also faxed some photos of her they said yes it was obvious but we needed to bring her down there and she was very resistant she cannot stand doctors and refused .
When she was an infant she had several surgeries one on the aorta of her heart , I don't each ear as she had some kind of tumors can't think of what they were called in her ears were on her ears and she was born with webbed toes .
She almost died of starvation because they didn't know there was a stoma a flap of skin blocking any food from going into her stomach and she had to have emergency surgery for that .
My sister looks very similar to you except she has a wide space in between her two top front teeth ... years ago on Oprah Winfrey they had Williams syndrome people on and I knew this was my sister's tribe and that's when I realized she has Williams and must have been misdiagnosed .
I wanted so much for her to be able to find her own group of people ... her own tribe .
Oddly enough I have never been able to find those clips here on the internet from that episode of Oprah but those clips were here some years ago .
My sister is hard of hearing and so has had to wear hearing aids going way back .
I forgot to mention she was also born with , I thought my mother called them duck feet in other words they stuck way out sort of pointing out towards the side and so they needed to manipulate her ankles and feet .
While there were some things she just couldn't do in school she is very good at other things .
And like most Williams syndrome people has to listen to music every day .
I need to know are there any Pharmaceuticals or medicines that people with Williams syndrome are not supposed to have ?
Regrettably my sister ended up in a nursing home ... she and I did not want this and I live about 1,400 Mi away ... my brother and other sister have power of attorney .
Finally tonight I was able to get my brother to understand why it is so important to get her diagnosed properly .
There is a Williams organization in the general area back home in suburban Philadelphia where my sister is but I don't know if they can give me info I called them once many months ago and don't believe they called me back .
I'm not sure where to start because she is on Medicaid and I don't believe her nursing home doctor will care or not whether she has Williams syndrome.
I know that once she is diagnosed that hopefully the local Williams syndrome people could maybe connect with her because I'm hoping so much some of them would try to visit her in the nursing home and when she is ambulatory again and able to walk outside maybe even get to occasionally go somewhere with them , even if it is down the street to a cafe .
i hope my son grows up like this man because it gives me so much hope that he will be happy :..)
My cousin is 68 years old with WS..we are looking for groups to get him involved in and possibly a group home with other WS people. We are in Florida…any suggestions? He is actually in fair health, very mobile and always happy..
Is he part of the WSA? williams-syndrome.org/membership
@@Williams-syndromeOrg no..since birth, he was sheltered because of his disability…the mother has since passed and the family is looking for guidance as he needs to be around his own support group.
@@deannamorgan1685 We can likely help, but it's best to become a member so you hear about our programs. It's free.
Deanna , we are in a similar situation with my 74 year old sister except it is more difficult since she is in a nursing home .
I live in Dallas and she and my other siblings are all in suburban Philadelphia .
Off and on for decades I complained that my sister was misdiagnosed with Turner's when it's so obvious she has Williams .
Years ago when I spoke with the genetics department at Jefferson Hospital in Philly they were also convinced she has it especially after they saw her photos that I faxed ... she cannot stand doctors and refuse to go when I made an appointment for us .
I want her to be able to make friends and be visited by Williams syndrome people but I need to get her diagnosed first but I know they are her tribe as people call it nowadays .
She deserves this in her lifetime
I also need to know if there are any Pharmaceuticals or medications that Williams syndrome people are not supposed to have .
I'm sort of caught up in a catch-22 right now until I can get her diagnosed with Williams ... if I don't get her diagnosed with Williams there's a good likelihood they could be giving her meds that Williams syndrome people cannot have .
I'm not sure what the first step is to take because I don't anticipate a nursing home doctor caring about whether or not she has Williams when they already think she has Turners ... even the genetics department at Jefferson said she does not have Turners .
Hi, I am a caregiver for someone with William's syndrome. She is often mean to people who she views as a weak link. Is this common or more of a personality trait?
Every individual with WS is different, but this is not a known trait of WS.
Is there any way you could explain more about this being mean ?
The reason I asked is even though my sister has not been officially diagnosed with Williams I have known for quite some time that she has it but a lot of times she does not feel well and so there have been a few times it made her grumpy but not malicious .
Could there be a possibility that the person is dual diagnosis or even multiple diagnosis. Basically meaning they have Williams syndrome along with autism, or a learning or behavioral disorder. While it may not be common for Williams Syndrome individuals to be mean or aggressive ( of course all are different) it could be a possibility that they have another disorder contributing to the behavior along with Williams syndrome.
Do you, William my name is Kelly I have one arm syndrome as well. I live in a home where I can’t have much fun but I am 39 years old been wanting to get all the people that have the same thing as I have my heart’s been down because I don’t have friends that have William syndrome. I am on in if you want to be my friend as well.💞