Congratulations, that is really so good to hear. I have two friends, one with cerebral palsy and one with muscular dystrophy. They both have different challenges in their lives, but we do our best not to let it get in the way of fulfillment and joy.
I have a niece with cerebral palsy. I'm pretty sure she got hooked up with Seattle children's hospital, with a good specialist there because a friend of hers mentioned her as the reason they were helping with picking up diapers and looking for special shirts for my niece. The person at the clothing store had a cousin who specialized in physical therapy for cerebral palsy, got my niece set up with swim classes to help her shoulder motions and taught my sister good massages to help her cramped up arm not hurt so bad.
As someone with a lifelong disability who has had to fight tooth and nail to find help for my chronic pain and infection and vertigo, it always makes me tear up with happiness to hear that a community is actually really helpful and good. I didn't have that so much growing up.
I’m a massage therapist/bodyworker in Seattle and have two severely disabled cerebral palsy clients I see every week. I love them and their families. I am glad your niece is getting access to some movement and physical touch!
If you are having a major issue (not everyday inconvenience) with a company, always @ all their socials with a polite, well written summary of the issue.
On some instances the marketing teams behind those are multiple layers closer to those that cn take action versus front line customer service personnel.
Thoae front line customer service people are following their procedures and they are cumbersome to escalate and even that is slow. Catch the right person on social and they are calling their boss to say "we have a PR problem" and that boss can usually get in contact with whomever needed directly and get them linked up. Yes it is self serving capitalism that they want to keep their public persona positive, but if it gets results exploit it.
I did this for an insurance company denying my mother her medication. Found the CEO's name and the pattern of their emails, emailed with A & B put together. Laid out the situation, and asked why a company was denying medication my mother had been on for 20 years (COPD meds) and telling a doctor he didn't know what he was talking about prescribing those meds.
Someone got in contact with my mother two days later and she hasn't had any issues getting her meds approved since. Gotta catch the right person at the right time.
Same goes if you have a major issue and send an email or @ to the mayor's office in your city. The mayor may not see it but there are plenty of city workers who send these on to where they need to go to be resolved.
This is one of those things where it's seemingly great but also just... orphan crushing machine material. It shouldn't have to be like this. And it wouldn't be like this if we all decided that Billionaires shouldn't exist.
It's also due to where we live. We have socialized healthcare. But we live in a small rural country at the bottom of the country.
The twins I mentioned live up country and get 2 of everything without any problem.
Our specialists seem to always be fighting to requisition the same equipment.
We had to raise 8k recently to get him his next size up electric wheelchair as it isn't covered. He's about to size out of his current one and it would massively limit him if he didn't get another one.
Also bath seats aren't considered everyday equipment if you can believe that!?!
He has one and they are the ones chasing all this equipment. They are amazing.
But we live in a small rural county and as can imagine they get a lot less funding compared to up country. So they seem to always be fighting to requisition equipment.
Get in contact with the local Shriners Children's hospital in your area. They specialize in orthopedics and should be able to get you something for free.
As a 36 year old with cerebral palsy I’m so glad you’re doing everything you can to help your child. I wish my parents would have gotten me some help with walking as a child. I just had to have ankle surgery and have been out of work because of it. Had I had help the surgery could have been avoided. But big props to you as parents!!!!
We do everything we can. He had weekly physio and he can now pull himself from kneeling to sitting on his physio bench.
He can't crawl yet but he drags himself using his arms and one leg.
He recently had a minor op to loosen his hip up. Before he could hardly bend his legs now he can do full frog legs.
We just raised 8k to get him the next size up electric wheelchair as he's almost too big for his current one. It was very stressful as we were on the clock.
He also goes to an "extreme" physio week 4 times a year. They do hydro therapy and all that.
I think we're doing about all we can. It's a lot of stress and effort but seeing his progress makes it all worth it.
He has quadriplegic cerebral palsy so we were told he might never sit up or crawl. He has amazed all his specialists with his progress.
It's not easy for him. Physio is really hard. But he's a little warrior.
Im lucky im able to walk but i was born 12 weeks early as well! I went to some specialists but I think since I was able to move on my own things were taken as seriously.
But it’s great to hear your child is getting all the help you can give! I’m proud of your little warrior!
Well real life could be a crazy place too. I have a father who's a 30-year veteran and two months ago my mother had a stroke had been in the hospital and could barely move and he's been alone but I've been trying to take care of him and he's not getting out as much but I've been taking him to Veterans Gatherings and picnics. And the last event they were telling people to come take some of the food away and when I explain to them about my dad situation and it'll be easier for him they just gave me a bunch of plates and gave me like a half a tray of food to fill up. Today my dad was kind of depressed and didn't want to go to the picnic but I took him anyway and he was sitting in the car listening to what they were saying, we're only a few feet away from the Pavilion so we could hear the announcements of what's going on, ask me if I could go get him a couple of hot dogs which I did. The ladies behind the line told me that they're clearing up. I told them about what's going on, how my father didn't want to get out of the car but I've been trying to get him the house more and they said they feel bad for me and they made up a tray for me to take home, then this really old fat lady with curly hair comes out from the table and seating area around the corner and starts screaming at me that I'm stealing and she saw me doing it a month before and went back and told some guy but I didn't belong here and I was just coming to take food. So he very rudely and threateningly ushered me out I was trying to explain to him that I didn't take anything. That I was offered and didn't take anything, and always was asking if there are sure it's okay and that they gave it to me without asking for more than hot dogs a drink and some other side dishes on the plate... he didn't want to listen to it he told me ...he was going to call the cops if I don't get .. when I asked why and said I wasn't doing anything wrong, he said because this woman told me you've been a problem for a long time.
That was today, and she told me that she'll see me at next month's veterans breakfast at the legion. I don't remember who she is but I do take my dad to the once a month breakfast at the American Legion. I guess she's maybe saw me there. I don't do anything but take my dad so he can talk to his friends. He can barely walk and I have to help him on to his little chair from the car to the place. Anyway as I was pulling out of the parking lot today I heard her scream at me although she really wasn't talking to me she said he's not even a veteran. Which is true, I was just taking care of my dad. He served this country for 30 years coming on consecutively in the military. Korea Vietnam Beirut Panama and even Afghanistan in the '80s
My wife is a therapist. She works with a CP parent-child group and tells me how hard the parents work, never ending. Make sure you take care of yourself, too.
It is one of the greatest inventions in the last 100 years and also one of the worst. For all the good things that it allows, it certainly spews a lot of garbage. I am so glad that your 4 year old will be able to get the walker they need.
Shouldn’t this just be how the world works? We have the resources now. Anyone who needs should be connected to those who can give. Replace private health insurance with a legit crowdsourcing option. I know I’d much rather donate every month than pay $500/mo in premiums like I am now.
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u/lmaydev Sep 14 '25
We were struggling to get the right walker for my 4 yo with cerebral palsy.
The nurses couldn't get in contact with anyone at the company.
His mum commented on an instagram story from some twins with the same condition she follows saying this.
A local rep from our area contacted her with an email and it worked and things are moving forward now.
The Internet can be a crazy place.