C/O 4 Emerson Road
Wednesfield
Wolverhampton
WV10 8DE
United Kingdom

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

Email Pal

Amy P's Parents/Guardians

Louise and Tom

Amy P's Siblings

Alex (09/04/1994 anything to do with planes, cars and the star wars), Kyle (28/07/2003 cars and the crazy frog)

Amy P's Interests

Dancing (Disco, Ballet), Barbie, All girly things, Reading (princess, girly etc), Watching films, High School Musical.

Amy P's Favourite Colour

Pink

Is Amy P able to read?

Yes

Is Amy P able to use hands?

Yes

Is Amy P visually/hearing impaired?

No

Does Amy P suffer from any developmental delay?

No

Story written 2004

Amy was diagnosed with Blackfan Diamond Anaemia at 28 days, after being born a month early and having had a HB level of only 3.4. After a blood transfusion given only hours after her birthday, her doctors hoped this was because of a tear in my placenta, but her HB started to drop again and after numerous tests was sent to Birmingham Children's hospital and was diagnosed after a Bone Marrow test was completed. Amys condition is not just present at birth it can be up to a year after till diagnosis is made.

Amy was given steroids but this failed to kick start her red cells so she is dependent on transfusions every 4-5 weeks.

Her first 2 years were extremely bad as she had no immune system and the slightest cold had her back in hospital with dramatically low HB levels and anaemic fevers.

She has Chelaton therapy for 8 hours a night (she cannot use up her red cells so they lodge in her organs and can eventually damage them if not given Cheleton Therapy to get rid of them). She also has a Vascaport which is used for her transfusions and she is due in hospital for a replacement vascaport sometime soon (in a waiting list as we speak).

Amy has a slight behavioural problem as she is not used to interactions (or doesn't know how to) with children as she is constantly surrounded by adults who have their entire life revolved around her.

Amy is a bright, happy, strong-willed and funny child, with a wonderful smile and a hug for anyone (even people she doesn't know!)

Update 4th April 2008

Amy is having problems with her port access at the moment and having a full transfusion through it is a nightmare. Cannulised every time through the back of her hand, we’re hoping she wont need a another port yet, as hers is only 3 years old and her last one lasted 5 years.

School problems are still a nightmare and she is now having another set of assessments done in her new school which will put her back with coursework as her junior school didn’t bother and just labeled her the naughty child, not the child who has dyspraxia! We are so dreading senior school, they are trying their best to set things in place for her for her first term, and this is the most help we have had in years thank goodness!

We had lots of Easter cards for all the kids, plus valentine’s cards too. We also had lots of things for the boys and they loved it, so thank you for everything.

Update 30th January 2008

Amy has been diagnosed with learning disabilities as well as dyspraxia, so we now have to fight the education board for help yet again. The only thing in place is the fact she gets extra time in her SATs which helps. Her new medication is working well, fingers crossed, but she has had a slight glitch in her liver results so we’re praying it isn’t affecting her liver, otherwise its back on the pump if it is! Apart from that, she is doing well and is on the mend programme for kids to help get her moving and lose some weight and she loves it!

Update 19th December 2007

Amy has had so many appointments this month to sort out how we address her behaviour as she is now under the learning difficulties label. We don’t think anything will be sorted until senior school which doesn’t help her or our sanity, but what can you do! On a lighter note, her health is great and her new meds are working great, the only problem we have is port access - every transfusion we have to pin her down and try to get in a needle at the moment and she isn’t easy to pin down now she is getting bigger!

We wish everyone at Post Pals a great Christmas and New Year and thank you for all the parcels and cards!

Update 1st October 2007

Amy is having OT appointments at the moment and is being referred for behaviour therapy too as she is having a lot of emotional difficulty due to her illness. This is a major problem at the moment and is a very difficult time for all the family. Health wise she is good and is now being bumped up to 4 units a month as she is getting bigger and the transfusions are not lasting as long. Her chelation therapy is working well and she is now being put onto a new drug that saves her having to use her sub cut pumps at night, so we are keeping our fingers crossed that this works for her, if not it means going back onto the sub-cut pumps again.

Thanks to everyone who regularly sends cards and letters to Amy and a big thanks for the lads cards and small packages they love them too.

Update 27th March 2007

Sorry i haven’t written for a while but i have been busy with appointments and organizing our annual conference for families.

Amy has had a good 6 months regarding school, although we had a set back last week with her behaviour and so will have to see how she responds to the way we are trying to correct things. We’re still waiting for her to be assessed for dyspraxia but as we have been waiting almost a year we are plodding along as best as we can. Health wise, she is fine and her treatment is working well. She is very healthy and happy at the moment.

Thanks to everyone who regularly sends cards and letters to Amy and also for the cards and small packages that arrive for the boys.

Update 13th June 2006

Amy is being tested for ADHD as she is being so disruptive at school. She has also been bumped up to a lovely batch of 3 units of blood every month now as she was running way too low and we could tell!!(It’s going to be long days or nights for us now) Some good news is that her iron count is low at the moment. Apart from that she is fine, though the hot weather is hitting her hard this year so she has not been able to play outside for long in this extreme heat.

Thanks to Katie for the cards etc they are still being kept on view in the living room and her box is full now so time for a sort out of old cards and letters I think.

Update 13th April 2006

Amy had bad news when we went to see her doctor; he told her it will be another few months before she can come off her sub-cut pump (we are not holding our breaths for her to come off it at all) so needless to say she was upset!! She has finished her sessions for her behaviour at home, as she has settled back down again thank goodness. School wise she is under the educational psychologist, who is monitoring her, but she has been really good for the past week and a half – it’s surprising what a lack of chocolate and biscuits can achieve!!! She is getting more stars on her chart and asks can someone send her some heart stickers so she can use them on her chart as she is running low on hearts and stars!! Health wise she is still ok - up every 4 weeks for blood transfusions but we are on 2 bags one month then 3 the next to keep her topped up nicely. Everything else is ok at the moment (fingers kept crossed) Her little brother has suffered some anemia but i am constantly assured it’s not DBA so we have another appointment to see Amy’s doctor for her and Kyle in the summer to check up on them both.

Update 2nd March 2006

Amy is just starting a few sessions to find out what the problem that’s causing her behaviour problems is. She settled for a bit, but has suddenly restarted her bad behaviour at school again, so we have to wait a while until she has done a few more sessions to find out the cause.

Amy is due to find out tomorrow if she can reduce or stop her sub cut pump as the oral treatment she is also on is working well at the moment.

Thanks again to everyone who has sent her mail.

Update 29th January 2006

Amy's health is great at the moment but her behaviour is being looked into as she is having a few problems at home and school. I will update again when we know what is going on.

Thanks to everyone for the many cards from all over the world she’s received this year. Thank you also to the class of children in Japan. Big thanks to Jennie and friends for the big postie box sent at Christmas - it took an hour to open and Amy was delighted with all the gifts.  Thanks to everyone who sent all the kids a small present, they loved them. Great pleasure is seen on the kid’s faces when they get a card or letter and even stickers - a small thing such as that is loved too.

Update October 2005

Amy is in good health at the moment we have had so many appointments all in one go we have had to run around everywhere almost every week for one thing and another. Amy also had a liver biopsy and was a great little patient was up and asking for food within 5 mins of waking up and was home the same day. The only problem we had was keeping her from jumping and running around the house for a week after, because she felt fine she couldn’t understand why she had to be calm. A good few months plenty of letters and still getting postcards too and her oldest brother has a new post pal who he is writing to even if it is a girl! Oh lads you have to love em!

Update May 1st 2005

Amy is fine at the moment and is in good health apart from the odd cold and ear infection. She is due a transfusion in 2 weeks time. The kids are loving being on Post Pals, especially Amy. The lads also had some stickers from Sue which made their day.

Update 1st April 2005

Amy is fine at the moment, wasn’t well last month had a really bad ear infection for 4 weeks, but is ok now and back to normal.

Update 17th January 2005

Amy's hospital ruined her first port access and I had to take her home before they used her as a human pin cushion again. She had her blood (although being 1 unit short) today on the outpatients ward. She had her friend Mikey come to stay over the weekend who also has DBA.

Update 31st December 2004

LOTS of great cards this month which made Amy’s very happy. She was waiting for post every day and was not disappointed. It made her xmas to know people out there online do care and take notice of things posted on there.

Amy has had her operation to have her port replaced and is doing well. It only took her a week to get over the operation and she is running around like nothing happened. She is due to use her new port in 2 weeks so hopefully it will make transfusions easier and shorter. She is now staying overnight in hospital for transfusions as she is having more units so it takes around 10 hours to do. She is in good health at the moment which is always a bonus, no illness for 6 months now so her immune system is a.o.k! Hope it stays that way.

Update 22nd December 2004

Amy went in for her vascaport replacement on Monday (too near xmas but had to be done) she did extremely well had the anesthetist in stitches and wasn’t scared at all. She was in a lot of pain on Monday when she came back from theatre, but we got home at around 7pm that night. Her first couple of days have been quite bad, but today she seems to be back to her old self and is smiling again and playing with her toys. We went out the house for about 20 mins today which was a bad idea because it wore her out too much. She has 2 weeks of no showers, which for a kid is a bonus! She will have a vascaport that now works for transfusions and as she had a transfusion on Friday night she will last out now till the New Year and we will see how well this new port now works.

All my thanks to everyone who is sending cards and parcels she is very excited and knows every day she will get mail. She gets more than us now and has a whole door full of cards from post pals friends. It has brightened up her day and even more so when our neighbour sent round a parcel the postman had delivered on Monday so that made her smile.