Don't know if I belong here?

[ChiiBaby]

I dont know if i belong here

My daughter is 2 and has two heart problems she has Coarctation of the Aorta (COA) and left superior vena cava to coronary sinus (LSVC)

She has had an MRI the other day but we are now waiting on a surgery date.

We are finding it pretty hard to pay for all her transport as we dont drive. Each time we go to the hospital the travel costs about £40 (mainly for taxis) the bus isnt that much cheaper either. We keep having to ask family members for money and we feel so bad for this. Do you think we would be intitled for anything?

Her symtoms-
shortness of breath, especially when "exercising" even walking she has to stop and we have to carry her or we just take her everywhere in her pushchair,
Leg cramps,
Headaches,
Heavy sweating,
Chest pains,
High blood pressure,
Doesnt eat that much.

Cant think of anymore at the moment (my head hurts)

 

[mummy2o]

Is it possible to get hospital transport? Its free. Also are you sure the bus isn't cheaper? A first day around here is about £4.00 and the village buses are cheaper than that, unless your traveling further a field then its £6-7 depending where in Bristol/Bath you want to go. And children under 5 are free

As for DLA or whatever it is being changed to it is worth applying for. We had the health visitor help fill in the forum for my son. You need to make sure you describe your daughter on the worse possible day. Sometimes you'll have to make an appeal, but that's up to you. The worse they can say is no. As for higher rate mobility at 2, as she can walk a short distance without pain(?) plus a lot of children are still in pushchairs at that age. My son was 4 when he was fully out of his, but your more than entitled to lower rate, not sure on normal care rate though as you haven't really describe what you do to look after her day in, day out. My son was a climber and had to have more or less 24/7 supervision in case he fell and hurt himself, he has no fear factor, etc. However, I'm not sure of the line cross over of a normal child to one with additional needs. That's for the person assessing it to decide.

 

[AP]

It would be worthwhile applying for DLA, and you can get support from local charities with this.
Simpily put, your child needs more care than most children their age, and the above poster is right, the worst that can happen is they say no.

DLA decision waiting times are higher than usual right now, (12 weeks) so I would do it as soon as you can.

 

[ChiiBaby]

Is it possible to get hospital transport? Its free. Also are you sure the bus isn't cheaper? A first day around here is about £4.00 and the village buses are cheaper than that, unless your traveling further a field then its £6-7 depending where in Bristol/Bath you want to go. And children under 5 are free

As for DLA or whatever it is being changed to it is worth applying for. We had the health visitor help fill in the forum for my son. You need to make sure you describe your daughter on the worse possible day. Sometimes you'll have to make an appeal, but that's up to you. The worse they can say is no. As for higher rate mobility at 2, as she can walk a short distance without pain(?) plus a lot of children are still in pushchairs at that age. My son was 4 when he was fully out of his, but your more than entitled to lower rate, not sure on normal care rate though as you haven't really describe what you do to look after her day in, day out. My son was a climber and had to have more or less 24/7 supervision in case he fell and hurt himself, he has no fear factor, etc. However, I'm not sure of the line cross over of a normal child to one with additional needs. That's for the person assessing it to decide.

We get a group ticket (all day tickets for2 adults 2 kids) on the bus its £12 and then we have to get a diffrent bus to the hospital
Also i need to see if they do transport.

I do have to do alot for her im with her 24/7 for the same reason as you, she climbs on everything! If she falls it makes her heart race and makes her ill

 

[sequeena]

Of course you are welcome

Yes definitely apply for DLA and also ring the hospital and see what their criteria is for hospital transport.