a rare genetic condition called cystic hygroma/ lymphatic malformation and claiming DLA

warriorof6

I came across this and joined as my son has a rare genetic condition called cystic hygroma/ lymphatic malformation and i have been told i may be able to get dla for him as he has had this condition from birth and he is likely to have it the rest of his life he is currently 1 years old anyway i got the form but because of his age i really dont have a clue how to fill it in as its all about mobility and he hasnt taken his first steps yet so im really confused what to do any help would be greatly appreciated thank you

steve51

Hi @warriorof6

A very very big welcome to you to our website and online community.

 I hope that this info is ok???

https://www.scope.org.uk/support/families/diagnosed

CockneyRebel

Hi warrior and welcome

These forms can be daunting at best. Try to get trained help from CAB or similar.
There may also be parents in our community that can offer some support and advice

CR

Sam_Alumni

Hi @warriorof6 welcome to the community, I have moved your post to the Ask an Benefits advisor so you can get more support

Meganmag123

Hi, my son also has this. We are having a lot of problems lately with it and hospital admissions. How did you get on please? 

chiarieds

Hi @Meganmag123 - & welcome to the community. Unfortunately this is an old post, & the person whose son had cystic hygroma hasn't been active on the forum since 2017 either. How is your son doing?

Meganmag123

Hi,

thank you very much! 

Not very good at the moment He’s under a plastics team at the moment and cellulitis. He’s 2.5 years and we’ve been told to watch all his activities. Due to any falling, sports etc can cause them
to burst again and more pain. I have called DLA I will fill the form out and see how I get on. 

chiarieds

While you wait for the DLA form, which looks like this: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1006745/dla1-child-interactive.pdf

you may find it helpful to keep a diary for about a week writing down where you feel your son needs more help than a child his age, & whether he also needs help during the night. See also: https://www.gov.uk/disability-living-allowance-children/eligibility

There's also great advice by another member which is also relevant to DLA. Please see:

https://forum.scope.org.uk/discussion/56365/pip-form-filling

Hoping this may help you complete his form.

Meganmag123

Thanks so much, greatly appreciated.