Is there an existing Foundation/charity for children with BWS?

[mayoljosh]

hi. i've never been so desperate in my life so i'm gonna have to say this.

having a child with something else is already devastating. what's worse is knowing that even the doctors in your place have no idea what to do to help your child or cant even give any helpful advice for management or just anything to ease your worry and all. the worst part is finding out that there are doctors out there who CAN help us out yet reaching that kind of service is next to impossibility just because you cant afford it. and its killing me.

so I wanna ask: is there any foundation or charity or anyone/anything who provides medical assistance to children with BWS?

[bwsmum]

Hi in the UK there is a support group and also a charity for BWS. In the USA there is a children's foundation. Personally I think because BWS is rare doctors do not know enough and parents are left feeling like they are doing all the work in finding out what treatment is needed and then it is a battle to get the screening protocol in place.

[mayoljosh in reply to bwsmum]

yes.that's definitely true.

[Pashin11]

I'm in the same situation that you are in the best advise I can give you is get in contact with your closest children's hospital they have many programs and other resources that can help your family best of luck I know it's frustrating my daughter is 3 and its still an everyday struggle

[mayoljosh in reply to Pashin11]

i wanna go there so bad. i'll try that but i really dont think they have those kind of programs you talk about, (i live in the philippines so its difficult in here). i feel like im living in a jungle or like im castaway in an island. thanks for your reply anyway. i appreciate it. i think i'll try your advise, i wouldn't know if i wont. i think im becoming too narrow-minded these days because of all these frustrations..

[Pashin11 in reply to mayoljosh]

I can completely understand that I became like that for a while just know you are not alone in this and even thou you live where you do children's hospital can still help you

[mayoljosh in reply to Pashin11]

i'm really glad i found this group, otherwise i would have gone crazy. many thanks. :')

[daisyduck BWS Support]

Here is the UK support website - bws-support.org.uk/

This website is supported by many health professionals in the UK (including GOSH) and the founders have lots of knowledge and experience.

I also know that discussions have been taking place with the Beckwith Clinic at GOSH to improve and update the website soon.

Where are you based? I agree it can be scary in the first few years. My daughter was very unwell at birth and spent 13 weeks in hospital. We have had a rocky few years, but what I can tell you is that she is now a happy 5 year old, who is doing very well at school and a lot of her medical issues have settled down - we can now manage them a lot easier and we cope with them rather than struggle.

[mayoljosh in reply to daisyduck]

hi daisyduck. I'm in the Philippines, specifically in the province of Misamis Oriental. It's very far from the capital city which is Manila that's why I'm having a hard time looking for doctors and all. I went to 3 different pedia but none of them helped. We were told to see a geneticist but there isn't one in our town. does the uk support group extend their help to filipinos with bws? i've been looking for filipino support groups but I havent had any fortune. not even other filipino who has bws.

[Rainada2004 in reply to mayoljosh]

Hi Mayoljosh,

I have been on the forum and rarely post unless I can provide useful feedback or there is some unique connection that I can relate to with others affected by BWS. I have a 9 year old child with BWS and we are half Filipino and this the first time I have read of a "Filipino" case. We do not live in the Phillippines, the US, or UK. We live in Guam and connected with the Beckwith-Wiedemann Children's Foundation (BWCF) from the US. This group put me in direct contact with the BWS Team of specialists in St. Louis Missouri. So there are NO BWS specialists in the Asia-Pacific region thus far. Geneticists that I have been able to make contact with that are familiar with BWS, but DO NOT specialize are in Hawaii. All that they will be able to do is confirm the condition but you still require the attention of the specialists (i.e. Oncology, Craniofacial, Speech Pathology, etc) to ensure that the special needs of your child are met. Additionally, there is no real assistance specific to those with BWS and confirming the condition through a genetic screening with enable you to acquire the necessary protocol for your child's care while working with a pediatrician. Hope this information helps.

[bonkers]

Mayoljosh, please try be strong, I can sense your despair for your child. Of course you are feeling desperate, you are worried about your child. The first thing my doctor advised was becoming part of this support group, the advice is invaluable. Never give up. Is there no-body in your local government department who can give you any information about foreign aid groups who might be able to help fund any screening or treatments ?