C/O 36 High Street
Dodworth
Barnsley
South Yorkshire
S75 3RG
United Kingdom

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

Email Pal

Laura H's Parents/Guardians

Kevin and Crystal

Laura H's Siblings

Laura H's Interests

Pirates of the caribbean, The Phantom of the Opera, Reading, Horse Riding, Fundraising, helping others, playing her keyboard, crystals, anything to do with Dr Who, Torchwood and Robin Hood (tv programs) making YouTube videos (mainly of Dr Who actors)

Laura H's Favourite Colour

Blue and black

Is Laura H able to read?

Yes

Is Laura H able to use hands?

Yes

Is Laura H visually/hearing impaired?

Yes

Does Laura H suffer from any developmental delay?

No

Favourite type of post?

Letters with an address so I can write back

N.B. When sending letters/cards or gifts in the post to Laura, please could you put your return address as Laura would like to reply to as many as possible.

Story written 2005

When Laura was born she was listless and bruised. I insisted on Laura being taken upstairs to the Special Care Baby Unit. Laura died on her way up there!! The first of several times.

Laura was put on Oxygen, a drip and had to have various blood tests, scans, etc. to find out what was wrong with her. She was diagnosed with an Overactive Pancreas, which was producing too much Insulin and stripping her blood sugar - HYPOGLYCEAMIA - causing her to fit and lose consciousness. 

We were told to prepare for the worst, so Laura was christened in Barnsley District General Hospital. On release we were informed that Laura had a Heart Murmur.

The next 12 months were even more traumatic. 

February 95, Laura was diagnosed as having severe Rickets so was admitted to hospital again for further tests.

Nearly 2 weeks later, the day before her first birthday, we came home even though the hospital didn't want us to.  

6th March 1995 the hospital rang to say:

“Can tell you that Laura has a Serious Kidney Problem, it’s called Fanconi Syndrome / Cystinosis, don't know more than that but go straight to Sheffield Children’s Hospital. There is a bed waiting for Laura as they should be able to treat her as they know more about the illness.”

Within no time Laura was on a regime of medication and overnight feeds via a Nasal Gastric Tube. She also saw the Opthalmic team to check for Cystine crystals in her eyes.

At the end of March Laura came home to wait to go to Nottingham City Hospital to have a Gastrostromy Tube fitted.

Since then Laura has been closely monitored at both Sheffield and Nottingham Hospitals. She goes back now every few months usually 3 or 4 for blood tests and has a bone age X-ray yearly.

She also has regular eye checks. The Hypoglycemic attacks still occur and we are awaiting more tests for that.

The Brain damage has been very slight; Laura is a little clumsy and slightly un-coordinated at times and struggles to fasten buttons or laces but is fine in herself.

She started to eat independently, even though she still didn't get hunger pangs. It took her 4 months to go from 800mls to nil but she did it! Laura is very determined!  As Laura was maintaining her weight the button was removed.

Unfortunately the site did not heal on its own (it had been there almost 7 years) so in June 2002 Laura went into hospital to have it sealed.

Her last few sets of results have not been too favorable, but having been told upon diagnosis that a KIDNEY TRANSPLANT would be required around 6-10 years (now 10-13 as medication has improved) we take each day as it comes.

Laura does get tired, she has weak muscle tone, asthma, hyper mobility in her joints (gets lots of aches and pains), is short-sighted, has astigmatism (eyeball misshapen) and is photosensitive (due to the cystinosis). 

BUT SHE IS STILL HERE!!!

Story update October 2007

Laura’s Renal status has now been changed from Chronic to Severe as her kidney function is less than 30%

Update 2nd May 2008

Laura was going to give an update on the 8th April but refused to do so once she had seen the message on Samantha's page as she felt that her problems were nothing compared to what Sam and her family must be going through. Laura was very annoyed with herself that she was complaining of being "off colour" when others were fighting for their lives.

Laura has been under the weather recently but most of Sunday 6th April she said she felt "wrong". She wasn't sure what was wrong but didn't feel right, felt tired and head achy. As the day wore on she said she felt a bit breathless so had her inhalers but that didn't really help. Teatime came and I made sure she had food especially sweet stuff as she said she felt "wobbly" which suggested a sugar episode again. By 8.30pm she was in real pain clutching her chest and was catching her breath so I took her straight to hospital. She said her pain score was 9+ out of 10 and she isn't one to complain but was in tears.

She had various tests done: Chest x-ray is fine, e.c.g. was a little erratic to start with but fine once we'd calmed her down. Blood results show further kidney deterioration and another dip in iron levels 9.9 should be 13.5 so altogether these created the feeling of near collapse. The doctors were brilliant. We were given the option of overnight stay or coming home and monitoring the situation at home so we decided on home - it was almost 2am.

Laura ended up in bed most of the week as she had no energy to do anything and little things like walking upstairs were too tiring for her. On Thursday she got up to go to school but after half an hour of trying to get ready she admitted defeat as she was in pain and felt sick and dizzy.

She had a very restless night on Thursday and kept saying the pain was kept getting worse. She explained it was like someone was pressing down on her chest but every so often they pressed harder and it was like a stabbing pain across her chest and into her back. She eventually fell asleep and woke up about 11am. The pain was still there then it really kicked in so around 2pm we took her back in.

She had another ECG which looked normal, but kept feeling dizzy and nauseous and couldn't stand for long before almost passing out in pain. A swelling had developed on her breastbone which was where the pain was localised so the doctors were going to x-ray it but the radiographer wouldn't saying that she had only been done on Sunday/Monday and the sternum is susceptible to radiation and he didn't feel it was necessary to do it.

We were then passed on to the paediatrics who thought the pain was: acid reflux due to all the medication she takes, thought it was anaemia problems as all the symptoms matched the ones last year, thought it could be related to the shoulder injury as collarbones shapes didn't match. So the orthopaedics were called and in the meantime we were admitted to the ward.

The orthopaedics thought it could be a trapped nerve somewhere between her shoulder/ neck, spine or even across the breastbone, and wanted x-rays of her cervical spine, shoulder and collarbone. She was kept in overnight as her pain hadn't subsided with pain relief, which wasn't surprising considering that everybody had kept poking and prodding her and making her sit up and "perform".

Needless to say, as most of the doctors knew nothing about Cystinosis, they were more bothered about the history and symptoms of that rather than treating her for the breathlessness. More doctors followed as she started to retch and then run a temperature but they just said keep an eye on her.

Saturday morning orthopaedics said they were certain it wasn't anything skeletal so it must be muscular pain. Paediatrics followed saying they were convinced that due to the renal problems, which are causing the anaemia, that it's joint/muscular related. Also, that people with Cystinosis had a tendency to grow boney deposits and one of the areas is around the breastbone. Basically, the pain is to be controlled using whatever pain relief works and we've to go to see the doctors at Sheffield as soon as possible so they can sort Laura out.

On Tuesday 22nd April she had another Iron Infusion to see if this will help boost the red blood cells again. We see the renal consultants on 13th May and hopefully we’ll know whether Laura needs regular injections of erythropoietin to help combat the anaemia and also to see if we need to be transferred to Nottingham City Hospital to start planning for dialysis/transplant.

Basically, Laura has had a rough month and has been admitted to A&E twice and had an overnight stay the second time for chest pains and breathing problems. She's had various tests - E.C.G's, X-rays and bloods, been seen by various doctors and told that as her kidney function fails, the normal aches and pains she has will increase as her body has to cope with slowing down. 

Thank you this month to all those at the Cardmaking Forum for the lovely cards. Thank you so much to the person who sent the autographed photo of David Tennant too - the envelope was all ripped and it came sealed in a plastic bag from the Post Office saying "Sorry this has been damaged in transit".

Update 2nd April 2008

I went back to A&E on Easter Sunday as I was in lots of pain. I had my shoulder and collarbone x-rayed this time. I’ve not exactly broken it but there is a separation of the ligament holding the shoulder and collarbone together, so it is out of alignment.

I went to see Orthopaedic consultant at Sheffield to see what they could suggest. Apart from pain relief and resting using the sling with occasional exercises to keep the arm mobile, I can't really do anything. Hopefully it will heal by itself but if it doesn't within 6 weeks of the injury (about 3 more weeks) then I may have to have the bones pinned back together. Altogether it could be a few months before I'm free of pain and can move my arm fully again - just what I need seeing as my SAT's are in a few weeks time!

I’ve been for more blood tests today to check on my kidney function/anaemia etc. By the time I go to see the Consultants in May they should have all the information so I will be able to update then.

Thanks to everyone who has sent cards, letters and gifts for my birthday and for Easter. I really appreciate your time and effort doing so. At present I can't write but am trying to reply as and when, typing one handed, in between catching up on schoolwork and revision.

Hope you all had a good Easter/month.

Update 18th March 2008

I've been struggling with constant migraines lately and they have been the abdominal type which has meant I've been vomiting as well as having the bad headaches.

I've also been very low and in lots of pain again so have spent lots of time in bed sleeping.

My kidney function has decreased again and I've got to have some more tests done during the Easter holidays so that the Doctors have all the results in for when I see them in May.

I fell off a wall at school on Friday and have jarred my shoulder. The pain is so bad and I am struggling to move my arm, so at the moment I have to wear a sling to support it. Typically it's my right arm/shoulder so I'm struggling to write/carry my school bag etc as I'm right handed. I still intend going to school though as I have too much time off due to illness.

I had a great birthday and would like to thank everyone who sent cards and gifts. I will eventually get round to replying to people but I do have a backlog as I've had lots of schoolwork to do.

Update 4th January 2008

Thankfully I’ve had a quiet time since coming out of hospital. I’m now walking around virtually pain free and am looking forward to returning to school next week.

I hope everyone has had an enjoyable Christmas and that the New Year is a good one for you all.

Thank you once again to everyone who takes the time to send me post. I am trying to get round to replying to all of you.

An extra special thank you to all who sent gifts, especially my Elves Kate and Emma.

Update 15th December 2007

I’ve had a bad few weeks. I went back to school on 9^th November as I had a Science test. Still didn’t feel well and had a sore throat, which turned out to be tonsillitis, so I was off school from the 15th. I went back on the 20th although I still wasn’t 100% and came home saying my legs hurt. Mum thought it was due to the walking around and up and down steps at school. On the 21^st I came home limping and in serious pain. My right knee was puffy and very sore. I ended up crying in pain, which isn't like me. We went to the GP's the next day and she wanted me to go to A & E at the hospital to see what I'd done. Mum rang the Orthopaedics instead and they said take pain relief and if it got worse to go to Casualty. On Friday I had to go as I couldn't walk and my knee was twice the size of the other one and the normal painkillers weren't helping. I had an x-ray and was given codeine to take. I was told to watch for vomiting, rash, headache or unexplained illness, as it could be septicaemia.

They made me an appointment to see the Orthopaedic Doctors at Sheffield Children's Hospital on Wednesday morning. I didn't feel very well before we set off, but by the time we got there I was shaking, going hot and cold and being sick, so the Doctor had to admit me. He wasn't sure if it was an infection in the fluid sack under my kneecap, around the pin site or actually in the bone. I had loads of x-rays, ultrasound, blood, urine and other tests to check for the problem. The Renal team had to be called to check that there was no problem from their side - kidney function has dropped a little with me keeping on being sick. I was kept in for a couple of days then allowed home, but told to rest and take medication to allow the infection to settle and then to go in and have the pins removed. 

I’ve just been in and had the pins removed (13^th December) and everything went well. I’m still in pain and am struggling to walk unaided, but hopefully I’ll be fine by Christmas.

Thank you to everyone who has written or contacted me, I wish you all a Merry Christmas and a Happy New Year.

Love Laura x

Update 8th November 2007

I had the Iron infusion done on 26^th October. My blood pressure and heart rate dropped slightly but I didn’t experience any major reaction to the treatment so was allowed home after resting for a couple of hours after the treatment.

I still feel low and run down; in fact I was sent home yesterday as I went really dizzy and nearly fainted. The GP has given me some more tablets to take and wants me to have further blood tests as he thinks it is still to do with me being anaemic and my kidney illness. If the iron doesn’t help my kidneys produce more red blood cells soon I will have to have regular injections.

Thank you once again to everyone who takes the time to send me post. I am trying to get round to replying to all of you. A big thank you to Jazzy for the letter and Halloween gifts. Thank you also to the girls from Mossneuk Primary School for the cards - you didn’t put a return address on so I can’t reply to you personally.

Update 3rd October 2007

I had more tests done early in September and then I saw the Consultants last week on the 25^th. My kidney function is now 30% so I’m classed as now having severe kidney failure.

I have to go into hospital during half-term for an iron infusion (similar to a blood transfusion) to treat the anaemia, as my blood/iron level is still only 9. I still feel tired, achy and generally run down but hopefully this will help.

Thank you to Craig and Daniel for the postcards from Germany (British Forces) and thank you once again to everyone who takes the time to send me post. A big thank you to Kat for the letter and gift despite being ill and struggling to write at the moment.

Update 2nd September 2007

The day after my last update I ended up in A & E for the afternoon as I couldn’t breathe properly, was shaking, my chest hurt, my heart was racing and my arms and legs had gone numb. I had to have oxygen for a couple of hours. At first the Doctors thought I was having an asthma attack combined with a low blood sugar attack. It ended up that I am anaemic, my blood level is 9 and it should be at least 11.5. This caused the trouble as there wasn't enough oxygen and rich blood getting round my system which caused me to feel so ill. The oxygen really helped and the Doctor said I must eat iron and potassium rich food to help build my blood levels back up or at least until the Renal consultant has checked what medications I can have. I see her at the end of the month but have to go to hospital for some more tests this week.

I’m also looking forward to starting back at school on Tuesday. 

Thank you once again to everyone who takes the time to send me post. 

Update 14th August 2007

We went away to Flamborough (near Bridlington on the East Coast of Yorkshire) on the 21st July and came back on Saturday.

I have received a quilt from a Mrs L Baldock and am about to send her a thank you letter :o)

Update 2nd July 2007

My health is up and down. Two weeks ago I had tonsillitis and then last week I had awful pains and was diagnosed as having an inflamed gallbladder. The doctor wanted to send me into hospital, but Mum has been ill with Shingles, so he gave me antibiotics and painkillers and said if the pain didn’t ease off over 24 -48 hours then I had to go in. I’m still at home! The pain is still there but no where near as bad. It hurts if I eat or drink certain foods so I’ve got to be careful. If it gets worse again then I will have to go back and go to hospital. Other than that I’m fine.

Thank you to all who continue to send me cards, letters, emails and gifts. I am trying to reply to all who supply an address. Thank you to Kat for the lovely book on decoupage and to Elizabeth for the photo – get well soon! I’m still spreading the word about post pals and have even made a poster and put it up at school.

Update 9th June 2007

April came and went without anything major to report. However, May has been slightly different!

I ended up in hospital for a few days with suspected appendicitis which turned out to be kidney stones.

I’ve seen the Rheumatologist who says I haven’t got Arthritis and the joint and muscle pains I have are due to the following things: my renal complaint - I had severe rickets when diagnosed with Cystinosis, my posture – I’m very flat footed and have no arch to my feet (which is why I wear splints) the hypoglycaemia at birth which caused the fitting and brain damage leaving me with delayed co-ordination and motor skills and balance problems, the slight curvature to my spine - again possibly due to rickets/Cystinosis.

I am still having physio treatment every 2 weeks and have just had a check up with the Renal team and my medicines have been adjusted again. 

Thank you to all who continue to send me cards, letters, emails and gifts. I am trying to reply to all who supply an address.

Update 2nd April 2007

I’ve had an up and down month, but shouldn’t grumble as there are many children and adults on here and elsewhere that are worse off than me.

The back and leg pain I have been having is getting worse so I’m seeing the Physio  more often and have been referred to see a Rheumatoid Arthritis Specialist to see what he can suggest. 

My birthday went well… I was sent home from school as I couldn’t stop vomiting. This turned to a viral infection.

Thank you to everyone who sent cards and gifts for my birthday, especially Julie and Alan Barrett, Kat R, Kate Dee, Hayley Thorn and yourselves at Post Pals. Sorry if I’ve missed anyone.

Update 24th February 2007

I’ve been for my results and routine check up. There is a slight deterioration in kidney function so we've had to adjust the medications and I’m now taking the equivalent of 57 tablets per day, not including pain relief tablets or inhalers.

I’ve also been to the Orthopaedic Specialist; the pins in my knees to strengthen and straighten my legs are helping a little but it hasn't worked as well as he would have hoped. We are going to give it a little longer though. He has done some X-rays on my spine and thinks the problem is more to do with my hips not being level. He is going to monitor me to make sure things don't get worse.

Update 8th February 2007

Laura broke 2 toes in an accident at school (going from changing room to dance studio and a heavy door swung shut trapping her foot as they do dance barefoot) Hospital can't do anything really except give pain relief so she ia hobbling around at present.

She has been for repeat bloods and will get results next week (14th). She also has to see Orthopaedic Surgeon on 21st about her legs, to see if operation has worked and also to check on spine curvature.

Update 3rd January 2007

Laura was ill before and during the Christmas period but as she says that’s nothing compared to what other families have had to go through.

She has physio for help with her back pain on 3^rd January and blood and other tests are to be repeated early in the New Year to get to the bottom of this viral infection which is causing problems.

Thank you to Celia my Elf, Kate D for the stocking full of presents, Hayley T, Elizabeth and Jack and everybody else who sent me presents and post. I really appreciate the trouble you have all gone to.

Update 2nd December 2006

Laura has had a good few weeks except for a bad migraine which left her in bed for a few days.

The doctors are pleased with her being able to tolerate her increased medication.

Thank you to Kate (Dee) and Julie and Alan Barrett and Jasmine from Texas who remain in touch

Update 12th October 2006

Laura has had a nasty viral infection since the middle of September.  It started of as a throat chest infection and has progressed to a kidney infection, having caused an arthritis flare up in between.

Many thanks to Julie Barrett, Kate Dee and Jasmine form Texas, who all regularly keep in touch with Laura.

Update 30th August 2006

Laura’s medication has been increased and she is tolerating it.

Laura has now reached 5ft which she thinks is fantastic as we were warned that she may only reach 4ft 6ins to 5ft fully grown when she was a toddler.

She’s loving watching Dr Who at the moment and reading the books. In fact, she loves anything to do with the programme!

We have mentioned your website on a football forum that we post on and have asked the posters to send a message to any of the pals. Hopefully some of them will.

A big thank you to Julie Barrett for the beautiful needlework horse picture in frame that she sent Laura and thank you to everyone else who have sent things this month.

Update 8th July 2006

Laura has twisted her right knee and has a slight tear in the muscle caused by the pin/screw head cutting into it when she slipped and twisted it on the 28th June. We ended up being in A & E for over 4 hours and had to be seen by the Orthopaedic Surgeons' Registrar to check the damage. Her knee is heavily bandaged up and she is taking lots of pain relief. She is adamant that she is ok though.

Thank you for your continued support.

Update 31st May 2006

Laura came out of hospital on the 21st April and has slowly been learning to get mobile again.

On 28th April my Mother in Law, Laura's last surviving Grandparent was rushed into hospital having suffered a heart attack. We were told that there was nothing the Doctors could do as her heart, lungs and kidneys were failing and it was just a matter of time. She managed to hang on until the 19th May when she passed away peacefully in her sleep.

Laura's body went into shock and she ended up with flu type symptoms of cough, sold, sore throat, dizziness/migraine, sickness and aches and pains. The GP said she must rest to get herself better as she had overdone things trying to get up and about quickly so as not to be a burden on us whilst Gran was so ill.

The funeral took place on Friday and Laura attended - she was determined to go.

Its school holidays now so hopefully she can unwind a little before returning to school.

Update 21st April 2006

Laura has just got in from hospital. The surgeon said the operation was a complete success and doesn't need to see her for the follow up for another four months. However, she now has to learn to walk again using her crutches. Laura has little upper body strength so is finding this very tiring. Her knees are also still quite painful.

Update 6th April 2006

Laura’s operation has been put back to the 20th April. She went for all her pre-op checks today, it took 3 hours plus and she has to go in on the 19th as she is on the morning list. They have said if all goes well then she will be home on the Saturday.

Update 20th March 2006

Laura is due to go into hospital to have her legs seen to on April 13th.

Laura and family would like to thank everyone who sent birthday cards, gifts and wishes to her.

Update 30th January 2006

Laura was ill all Christmas and new year and then her Gran has been in hospital with heart problems. Both are now ok, although Laura is recovering from flu.

Laura apologises for being late in replying to anyone who has sent letters etc. and an address, but she is slowly getting round to it.

Laura is due at the hospital on Wednesday 1st February, so we will let you know if anything changes.

Update 19th December 2005

On Wednesday Laura saw an Orthopaedic Surgeon about her legs (the bones are turning in at the knees and out at the ankles causing lots of pain; she has had physio etc over the years but has relied on pain relief).

He has said that she has to go into hospital for an operation on both legs to put screws in to realign the bones. Hopefully it will be an overnight stay and then on crutches for a couple of weeks. The screws will be in place for about 9 months. The operation will take place in a few months time - talking about March time.

Obviously she is upset at the news but has said that if it helps to take away some of her pain, then lets get it done.

Thanks for all your support, gifts and letters.