The life of a SWAN

Swans are beautiful, and they have a certain majestic quality to them. The fact they are pure white to me always represents their innocence.

My daughters a SWAN, not because she is a bird, but she is a child with a syndrome without a name. 
She captivates everyone she meets with her beautiful smile, she is a joy, she is placid, she is innocent, she has all the qualities of an actual swan. 

Yesterday we were at Great Ormond Street. We were seeing a new team, a different set of eyes, a different set of people. This seems to be quite common in a SWANs life.

She had physiotherapy who advised that she is good. She does have hypotonia, she does have hypermobility but they could not see why her movements wouldn’t improve. They took measurements, they measured how flexible she is and said she was extremely flexible in the hips and legs. They stood her up, she couldn’t and wouldn’t bear weight on her legs. They decided to put some leg braces on. Apparently people with hypotonia and hypermobility generally when they have braces on can stand up, not our girl through. They are still recommending braces so that she can practice standing with the help of us holding her.

Standing with support.

They weren’t sure why her muscles just give up. 

We went to the consultants  office where we were seen by a couple of consultants and registrars. They spent over an hour discussing, photographing, and examining baby girl. It sounded like they were just going to say she was globally delayed, this wasn’t the case she was still a SWAN.

Our SWAN is confusing the consultants still. They think it’s either a channelopathy but more likely a syndrome due to her distinctive skeletal features, her head shape, her facial features. She again fits into a few things but not completely. Her blood work doesn’t add up so this was retaken as was Dad and mine. We were given a list of numbers, but it was a list of therapists, and support workers. We were briefly told that depending on the results family members would need to be tested to see if their carriers or have the condition to. We were put on a research program. 

Our SWAN is special. 

We now have a bunch of leaflets to read, we have a bunch of questions we aren’t sure whether to ask or who to ask. 

We are on another path of hope that at the end of this research, they may find a reason for everything and at the same time we are trying not to hold our breath as we may still have no answers. 

Having a SWAN was not where I thought we would be on our parenting journey. Parenting a SWAN is hard, going to so many appointments and learning so much but at the same time getting no further along in the diagnosis is hard, it sometimes breaks my heart but I refuse to give up.

Our baby girl is still happy, our baby is still progressing in some areas, our baby hasn’t given up so I won’t give up on finding out the cause of her problems. 


SWANs are amazing, unique and without SWAN UK I would think I was alone in my journey when really there are so many people in the same boat, just feeling like their getting no where but knowing their child is amazing. 

If you have a child who is a SWAN then head over to their website and join the community. Share your burdens and worries with people who are in similar situations. There are over 6,000 SWANs born a year. 

Just never forget, SWANS are beautiful in all aspectsof life.

SWAN UK is the only specialist support available for families like mine, they get no government funding. 

If you can donate even £2 it could make such a huge difference to the support available for people in my situation. 

£2 will cover the cost of a welcome pack which provides lots of support and information for new families

£30 will cover the cost of balloons for a child who has had a long stay in hospital. Unfortunately hospital becomes a second home to most SWANs
Donate by

Text SWAN11 then anything from £3-£10 to 70070

Cheque send a cheque made out to SWAN UK address can be found on their website 

Online via their Virgin money giving website or Justgiving page 

Advertisements

3 Comments Add yours

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s