C/O 59 Albany Avenue
South Shore
Blackpool
Lancashire
FY4 1QB
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Emily-Jo B's Parents/Guardians

Lesley

Emily-Jo B's Siblings

Danielle (adult)

Emily-Jo B's Interests

Cheerleading, dancing, gymnastics, having fun with friends when well enough, clothes, shoes, music and concerts.

Emily-Jo B's Favourite Colour

Purple and pink

Is Emily-Jo B able to read?

Yes

Is Emily-Jo B able to use hands?

Yes

Is Emily-Jo B visually/hearing impaired?

No

Does Emily-Jo B suffer from any developmental delay?

No

Story written 2011

Emily was diagnosed with Cystic Fibrosis in 2007 aged 8. This was a shock to us and as a family as we knew nothing about this disease then. Emily has to have physio twice a day and she takes up to thirty to forty tablets a day plus 5 nebulisers a day to help her lungs. Emily also has CF related liver disease and has to have a lot of scans to keep a check on her liver.

Emily has a portacath fitted now and this makes her IV’s less traumatic for as she hated having long lines so much. We can do home IV’s for Emily when she is well enough so it is fantastic for her as she can carry on at school and do everything she likes as normal.

Emily also has high calorie drinks everyday to keep her weight up and I must say she loves them but only chocolate flavour Calshake!

Emily has 2 older brothers and 3 older sisters. Danielle is the only sister who is still at home. All love her very much and encourage her so much. It has been hard for us as a family with this diagnosis, but as a family we will get there and battle

this with Emily.

Update 9th April 2012

Emily's Iv's didn't go too well this time, it was a nightmare from the start as they didn't have any beds to admit her and she had been unwell for over a week. Her specialist nurse and consultant wanted Emily to start her IV's as soon as possible but we kept being told there were no beds. In the end Emily's consultant had us bring Emily into hospital for a few hours to have her gripper put in to start IV's then she could go home after a few hours. However this never happens as they like to keep an eye on her over night to make sure everything is ok and she gets to see physio etc, but with this bed situation Emily's consultant didn't want her to wait any longer as she wasn't 100%! Well, IV's started and we got home, but that night Emily started complaining of pains in her port site, so we could only give her some painkillers and make her comfortable until the morning when we then rang the hospital to tell them. We were told not to worry and someone would get back to us. So we waited and the pains didn't go away... so we called again, but still nothing. We had to just keep giving pain relief to Emily and after 2/3 days we spoke to her specialist nurse and explained what was going on and she contacted the consultant. We had to take Emily up to hospital and they just had a look and made sure it was flushing ok etc but we had already said that it was. The pains never went away and Emily was so unhappy, she didn't want to do anything and days were passing by and we just felt so useless. Then we had another bad night with Emily up all night so we’d had enough and called them again in the morning. They had us go back again and this time they X-rayed her port site and also put a dye through to make sure there were no blockages. As we had told them before though, her port had been flushing and was drawing back fine so we didn't think it was a blockage, but it was best to check it out, as we were baffled with Emily's pains. A few more days passed and Emily couldn't cope any longer so we went back and they decided to change the gripper and tried putting another in but that failed and it bent going in. By this time Emily was hysterical and wouldn't let them near her again (this was day 9 of her IV's so she had put up with enough really). We saw the doctor on duty and he said it looked like the antibiotic had irritated her vein which caused the pain. This has never happened before to Emily and we really hope it doesn't happen again either. The doctor had to put Emily on some oral antibiotics to cover the rest of her IV's as she hadn't finished the course! It took almost a week for the pains to go after all that but it was so good to see Emily back to normal and having her lovely smile on her face again!

Thank you for all of Emily’s post. Emily has had some lovely mail from Alex Stiles Welch, she has boosted up Emily's mail so much recently, it’s so lovely. You all do such amazing jobs to bring smiles to our kids, we can't thank you enough. Thank you all very much!

Update 29th February 2012

We had an appointment to see Emily's liver specialist in Manchester a few weeks ago. We have always known that her spleen was enlarged because of her liver disease, but today we found out that her platelets are dropping because of her spleen and if this carries they have no option but to remove Emily's spleen. We are hoping that this takes time and things slow down as they couldn't put a time on how long this could take etc, so at the minute they will take regular blood tests when Emily goes into hospital for her IV's. Right now all we can do is hope her count stays where it is at now... that was 99, so fingers crossed!

Emily now attends a dance school and does Tap, Ballet and Contemporary. She had her first ballet panto last weekend and made us very proud.

Update 4th February 2012

Emily's not been too bad this month. She's had a lot of hospital visits and different tests being done this month, GTT test, liver scan, x-rays, lung function. We just hate waiting on results.

She's been doing well in school and had her school report at the end of the month. We were really pleased with her straight A's and 2 B's in effort. Well, we can't ask for anymore than that from her and we’re so pleased for her. We just hope she can keep it up and maybe have a few months break so she can stay well to stay in school more.

Update 11th January 2012

Emily had a bad run up to Christmas as she just had no energy and was coughing constantly. We took her up to hospital one night as she couldn't breathe properly. Her chest was tight and they put her on some oral antibiotics for 2 weeks but that didn't really do much to help. Emily also had a cheerleading competition coming up and she was determined she was going do this. We spoke to her consultant and he is all for Emily doing her activities, so he said she could go ahead with this competition and then they would admit her early to start her iv's. Emily did so well at her competition and her team came home with 15 trophies, so she was very happy. Emily then went into hospital to start her iv's and once they started to work we all had a lovely Christmas and New Year.

Update 2nd November 2011

Emily has been off school and under the weather after having her cervical cancer jab a few days ago and then yesterday her flu jab too. These have made her feel unwell so she's been busy doing her Christmas cards for Post Pals.

Emily loved all her cards she received for her 13th birthday and it made it even more special for her, so thank you all again. She also loved her Halloween gift pack that she got in the post, it was really lovely.

Update 10th October 2011

Emily hasn't been too well again this week so we had another visit to hospital. She has a viral throat infection and was given some oral antibiotics and spray for her sore throat but her chest was clear which was good news. We’re so pleased about that as it is Emily’s birthday on Saturday and she is having a massive party with all her friends and a limo with her close friends, so I’m sure she will be back to herself by then and have loads of fun. She is very excited about it all now!

Update 4th October 2011

We're not having a good time at the minute with Emily as she's been off colour quite a lot and is now on more oral antibiotics. It is not that long since she finished her iv's either so she seems to be at home a lot at the moment.

Update 24th March 2011

Emily is off school ill again at the moment. We took her to our hospital to be checked out and she has an ear and throat infection which is making it hard for her to breathe properly. The post she has been getting has made her smile though so thank you all.

Update 10th March 2011

I would like to say a big thank you to Nichola, Jon & Daniel W, for the beautiful card Emily-Jo received today, it's just what she needed as she has been off school unwell the past few days and she just finished her iv's too so she's just resting now and getting better.