C/O The Homestead
Main Road
Filby
Great Yarmouth
Norfolk
NR29 3HS
United Kingdom

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

Email Pal

Ryan H's Parents/Guardians

Gina and Graham

Ryan H's Siblings

Jasmin (21/4/02) Barbies, Bratz dolls, drawing and colouring. Anything pink and fluffy. Baby Annabell and Baby Born.

Ryan H's Interests

Swimming, cycling, football, computer games, PS2, riding his dirt bike, army games, Lord of the Rings, Simpsons, Top Gear, his pet lizard, collecting keyrings and Top Trump cards. Bandanas, black or silver costume jewellery.

Ryan H's Favourite Colour

Blue

Is Ryan H able to read?

Yes

Is Ryan H able to use hands?

Yes

Is Ryan H visually/hearing impaired?

No

Does Ryan H suffer from any developmental delay?

No

Favourite type of post?

Postcards and letters

Religion?

CofE

Story written 2005

Ryan was diagnosed with cystic fibrosis when he was four weeks old. Medication and physiotherapy began straight away. Ryan kept fairly well as a baby and toddler, having only a few hospital admissions with chest infections. When he was 5 years old he had to have surgery for Intussusception (collapsed bowels), his appendix was also removed. His chest infections came more often so he had a chest port-a-cath inserted for easier intravenous access.

Abdominal and constipation pain continued and following a year of tests Ryan had more surgery a few years later. Adhesions from his bowel were removed, bowel rotated and his gall balder was removed. Due to a deterioration in his health a gastrostomy tube was fitted in his stomach for over night feeds.

Over the last 3 years Ryan has gone from strength to strength. He has begun to catch up with missed school work. In 2003 he won a Cystic Fibrosis award for showing real determination at fighting CF. Ryan now has IV’s every 3 months via his portacath.

He is a fantastic boy with a great smile and awesome sense of humour and loved a whole lot by his family.

Update 8th June 2010

Ryan's IVS has been extended for another 7 days as he is still very chesty and productive. His lung function has improved though so hopefully another week will see him well again. Despite feeling very poorly this morning he struggled into school for an hour to do his English exam and came home to go to bed.

Thank you for everyone who has written and emailed him wishing him luck in his exams. This week is going to be pretty tough going for him now, especially as he is poorly.

Update 30th May 2010

Ryan is currently on a course of IVS for a chest infection. He was struggling with his chest and finding breathing difficult, especially when he was walking and had a chesty cough. At the hospital his lung function had dropped and his chest sounded crackly. They started a 2 week course which ends on the day of his first exam, so hopefully he will be well for his exams. A long line was put into his arm as he is still waiting for his new Port- a -cath... this operation has been provisionally booked for the 7th July.

Ryan managed to go into school on the last day of term as it was his last full day apart from going back for exams. This half term will be spent revising and resting. 

On 4th July, Ryan's 17 year old brother, Shaun, is doing a Tandem skydive in aid of The Cystic Fibrosis Trust so we are all looking forward to that - I think I will have my eyes closed though!!

Thank you to everyone that has sent mail, gifts, letters, postcards, keyrings and things to Ryan and his sister, Jasmin. Ryan still has a few to open and I will list specific thank you’s next month.

Update 4th May 2010

Following Ryan's last course of IVS he has kept remarkably well. At the hospital last week his chest was clear and his lung function was back up again. He had also put weight on so that was another XBOX game bought for him.

Regarding his new Portacath, we saw the consultant during the Easter holidays and Ryan is now waiting for an appointment for a scan to see what party of the port is blocked. If the line is ok he will have a new port attached to it, but if the line is blocked he will need a complete new port and line. The scan will also see if the new port could be put back in his right side of his chest or not.

Ryan's next course of IVS is due the end of May but we are hoping this can wait until after his exams and finishing school at the end of June. Hopefully his new port will be put in then too. If there is any sign of Ryan going downhill again I have to contact the hospital and IVS will be started with a canula in his hand. We must keep him as well as possible as June is going to be pretty tough going for him during his exams. Ryan has 10 hours of GCSE Art exam this week so fingers crossed he copes.

Ryan has had to stop all nebulised drugs again as they leave him with a very annoying persistent dry cough despite using ventolin prior to the nebs. This is the first thing the Adult Team will address when he changes over into their care after June. He has already met the Adult team and although it will be sad to leave the comfort of the children’s team, I am sure he will be well looked after. I think I will struggle more though when he finally sees the Doctor without me being present.

His driving lessons are going well and his instructor says he has a natural flare in driving. In a few weeks time I hope to be able to order his Fiesta as this can take 2 months to be delivered.

Ryan has received lots of mail this month. The postman to the address used has been bringing it by the bag full. His keyring collection is going well and he is getting them from all over the world. Jasmin is not being forgotten either.

Thanks to the following… Elizabeth Eckardt (USA), Jane Kirby (Woking), Patricia, Samrana who sent a gift to Jasmin (W.Yorkshire), Sarah G, Jane Saddleworth, Kirsty A, Clare Carrier (London), Caroline, Dan & Max Evans (France), Richard, Selena, Sylvia (Staffordshire), Amy (Italy), Vauxhall Cars, Charlie (Derby), Ruth (Dorset), Robert, Edwards Family (Aberdeenshire), Antony, Alice, Peter (London), Nick Sheppard (Perterborough), Nicky Merrick (Wallasey), Steph Hunter (Lancashire), Penny (Merseyside), Jenny (Penzance), Kristine Cirillo (US), Leona Tyrie (Scotland), Pamela Fuller, Amanda (Lanc), Alex Rose (Bucks), Maria (Hampshire), Ray (Greenwich), Wilma (Netherlands), Margaret (Boston), Chris (Gloucester), Georgia (Dereham), Trev (Italy), Margaret, Nick, Mayce, Christine Proctor (Bristol), Ashlea, Jennie from Deva Travel, Amanda Stemp (Surrey), Charlotte (Surrey), Phil Vicki & Ella (Berks), Margaret Greenberg (Boston), Laura (Estonia), Patricia, Susan (Glassgow), Maz (Scotland), Sarah Clarke, Despina, Sue (Derby), Toby & Zoe Gibson, Helen King, Ryan & Vicki (Edingburgh), Catherine White (Glasgow), Lee, Claire Chapman, Ellisha (Portsmouth), London Symphony Orchestra, Megan H & Beth, Ms Harvey, Jason & Helen (Darlington).

Special thanks to Grannie Ruth who writes to Ryan and includes Jasmin also - such kind words. And to Ema Kelly for that fab glass one off edition keyring. Ryan has received so many wonderful things, too many to mention, so please accept our heartfelt thanks. Ryan is studying hard for his GCSE at the moment but he has chosen a few letters to reply to but there just isn’t time to reply to everyone.  

Thank you also for the tickets to Alton Towers, the whole family will be making a long weekend out of it in the summer holidays.

Update 8th March 2010

Ryan's last course of IVS was extended another week as he was still chesty and his lung function wasn’t high enough. After two weeks of IVS his chest portacath stopped working completely resulting in him having to have a canula in his arm. Luckily, his veins are a lot bigger now and this lasted the rest of the course. After 22 days of IVS his chest was clear and his lung function much improved so his consultant stopped them. Ryan is waiting to be reviewed for a new portacath and he has an appointment after Easter. Ryan's GCSE'S also start after Easter, so his operation will have to be fitted in around his exams. We are hoping this will be before his next course of IVS is due.

Ryan started back on his nebulised antibiotics, using ventailin as well, to try and stop him coughing, but sadly after the second dose he was coughing non stop for 24 hours. As he has had this reaction again, the nebulised drugs have been stopped, but now he has nothing to keep pseudomonas in check. Ryan managed 4 and a half days at school last week, but we had to collect him as he fell asleep at school whilst having his physio. He was shattered after having 6 Science tests in 2 days!!

Ryan is doing well with his driving lessons and is eager to get his car.

Ryan's keyring collection continues to grow with some wonderful keyrings. Ryan has also received keychains, Top Trumps, Books and Games. The local post office thinks Ryan is very popular!! Special thank you to... Liz (Nasville), Wendal, Grannie Ruth (Newcastle), Kate Dee, Maria Carney (Co. Durham), Arlene McGuiness (Renfrewshire), Jean (Essex), Linus Harrison (Wales), Tracy Welham (Bury St Edmunds), Karen (New Zealand), Sadie, Ben, Ella and Lily, Fearne Cotton, Jane (Saddleworth), Angry Owl (Canada). Jasmin also received some lovely books from Samrana. These gifts have really helped lift Ryan's spirits as he has had a tough time of late. And our heartfelt thanks go to everyone.   

Update 1st February 2010

This school term hasn't been a good one for Ryan so far. I think he has managed 2 weeks so far. First of all he had a reaction to his Nebulisers he started at the beginning of January. He was sent home from school and we waited to get a lower dose for him. The lower dose left him a little shaky still so he stayed at home for the rest of the week until it settled. He returned the following week only to be sent home again on the Wednesday feeling very rough and short of breath. He was having an abdomen scan the following day so I took him to see his consultant for a check up just in case. His lung function had dropped by 30% and he was getting very short of breath. He was coughing up a lot of green mucus so the only thing that could be done was more IVS, only two and a half weeks after finishing his last course!! I do his IVS at home to avoid having him admitted. That was last Thursday… 4 days ago… he is showing slight improvement but still has a nasty cough and shortness of breath. He is sleeping a lot which is good as he obviously needs the rest. I have contacted his school and asked for extensions on all his coursework as they had to be in today but it’s just not possible. It is a high possibility his chest Portacath is packing up... pushing his IVS through is getting harder by the day but as he is in no discomfort I am continuing with very sore thumbs!! His port has been in for 6 years so it has done well but I will get it reviewed when we see his consultant again next week.

We had good news though regarding his scan, everything looks normal despite raised liver levels on blood tests… so that is a great sigh of relief.

Ryan also started having driving lessons - he has managed to fit in 2 so far in between feeling ill and he is really enjoying it.

Jason and Shaun had their CF carrier test results back and Jason is a carrier whilst Shaun is not. Jasmin will be tested if she wants to when she is 16. Jasmin is finding it hard at the moment as she is so worried about her big brother. It’s a lot for her to take in (she’s only 7) but we are supporting her all we can.

January has been a great month for post for Ryan. His key-ring collection is growing by the day. He has received 39 key-rings to date. These include The Simpsons, Dices, Robots, Cars, Snoopy, Mickey, Bendy men, Globes, Lizards, The Rise of the Argonauts,

Mandarin Oriental key-rings, Chicago keyring, Wales keyring, fancy Singapore ones and many more. Ryan has also received other gifts as well and Jasmin hasn't been left out either. And each parcel had some lovely letters for Ryan which really touched us all.

Many thanks to all the following people... Christine (New England), Casey (Manchester), Lawrence Family (Warks), Jane (Oldham), Mrs Welham (Bury St Edmunds), Jordan & Reece (Middlesbrough), Christine Waller (USA), Henry & Mary Johnson (Houston), Marjolyn (Netherlands), Jane (N.Yorkshire), Jayne (Dorset), Yang, Mark, Jackie (Nashville Tennessee), Hwee Hoon (Singapore), Kerri Langley, Helen Brierley (High Peak), Helen, Frazeypie (money saving expert comp forum), Emma Stone (Cheltenham), Leslie Phillips (USA), Sara Jo Buffington (Chicago), Natasha Dan (London... the Top Gear annual was great), Jane Beswick (Saddlesworth), Wendy Jordan (Staffordshire), Tam (Tokyo), The Newmeyers Family (USA). Our intention is to write and thank all those who sent their address but please bear with us. Your kindness means a lot and I know it has helped Ryan over the last few weeks.

Update 18th January 2010

Ryan has received keyrings from Coventry, High Peak, Cheltenham, USA, London and Chicago!! We’ve also had some lovely letters/cards and gifts for Jasmin too. Thanks Post Pals and everyone who sent them... He is SMILING!!!

Update 3rd January 2010

Ryan managed to recover in time for his 16th birthday and his Dad took him and a few mates out to the Cinema to see Avatar followed by a McDonalds (only thing Ryan enjoys eating at the moment). After that, two of his mates stayed over and they played on the Xbox for most of the night. Many thanks to everyone who sent birthday cards and wishes to Ryan.

Ryan also had a great Christmas Day and was in high spirits. We had his Nan and Grandad over for the day and he was his usual cheeky self. However, on Boxing Day Ryan coughed up some blood. It was only a small amount so I decided just to monitor him giving him extra nebulised drugs. That evening Ryan started coughing up lots of blood accompanied by chest pain and getting really stressed. I contacted the Children's Assessment unit and was told to get him to hospital as soon as possible. We have unlimited open access to the hospital so it saves time as we don't have to go through A&E. After an x-ray and doctors examination, Ryan was admitted to hospital. His port was accessed and IVS were started. The doctor said the blood was most probably due to inflammation and infection (Ryan's lungs are colonised with Pseudomonas plus he had a Streptococcus pneumoniae infection).

Ryan was comfortable during the night despite still coughing up blood. He was discharged the following evening as I can administer his IV antibiotics at home for the next two weeks. The blood stopped after three days but at every cough we all make sure Ryan is ok. He has a follow up appointment in a week’s time. Coughing up blood is quite common in patients with CF, however this is the first time it has happened to Ryan and it’s very scary to be honest. We’re hoping to get a few answers at his review.

Special thanks to Lucy Clark for being Jasmin's Elf. She loved all the things you sent. Eeyore has pride of place on her bed. Thank you to Tez for Ryan's gifts, he looks really cool wearing them. Thanks to everyone who sent Christmas cards as well.

Update 5th December 2009

Ryan had a very good review at CF Clinic on Monday - his lung function was 110% which is wonderful. However he is now in bed ill with flu like symptoms again, only 2 weeks after getting better from his last bout of Flu. This is a real blow as he already has so much work to catch up on at school and if he cannot return to school next week it could mean he won’t be entered into his GCSE's.

He needs lots of support at the moment as do we. We are totally gutted that he should be ill again so soon.

Update 1st November 2009

Ryan has been very poorly with Swine Flu. He spent a night in hospital and then I cared for him at home. Prior to him getting swine flu he had been on IVS for 2 weeks due to a chest infection and off school. Two weeks on he is recovered but has been left with a very troublesome viral cough which goes on for hours at a time and is very stressing for him.

He has had some input from his psychologist as he has been feeling very down but we are hoping this will lift. Last term he only managed 2 weeks out of the seven weeks in school and there is a lot of missed work and he is behind in his coursework. I came out of parents evening in tears worried about how much schooling he has missed over the last 7 weeks. The school are being very supportive and he has been given a personalised timetable leaving out Ethics, Citizenship and English Lit so that he can concentrate on his core and chosen subjects. Ryan has not been entered into his GCSE English Lit as he is so far behind in the coursework.

At a meeting in school with all agencies involved, everyone was confident that with support Ryan can catch up, and he has chosen his college for next year and his course… Imedia and Graphics with the possibility of retaking English. He so badly wants to achieve, yet knows his CF is holding him back.

However, Ryan is looking forward to starting driving in December after his 16th Birthday and getting a car as soon as possible. Let’s hope he can stay well to enjoy his birthday and Christmas.

Thank you to Post Pals for the tickets too Legoland, we managed to go during the half term holiday. Ryan was rather worn out by the end of the day but we all had a great time.

Update 26th September 2009

Ryan had a fairly mixed summer health wise. He had a course of IVS as his summer holidays ended, due to another chest infection.

All through the summer he had a dry non productive cough that kept coming and going, resulting in numerous hospital and physio visits and his hay fever also played him up at times. Ryan alternates 2 nebulised antibiotics monthly and it appears that one of these is causing the dry coughing so we have to discuss this with his consultant next month.

Ryan has managed one week back to school and is off again with a bad chest infection and on a 2 week course of IVS which I am doing at home. He has also lost quite a bit of weight which isn’t helping him fight off his infection but his appetite has completely gone.

We changed hospitals as well this month as he now goes to a specialist hospital for the Adolescent Clinic. Ryan was looked after very well when we were there the other day sorting his IVS out… I can’t fault them. So once again my kitchen looks like a hospital treatment room but as long as we can get Ryan better it’s a small thing to live with.

With this being his GCSE year, he will get back to school as soon as he is able.

Many thanks to everyone who has sent him post.

Update 30th June 2009

At present Ryan is struggling with a cold and is off school. We are waiting on a cough swab result but he has developed a loose cough today, so it looks like he will be having a course of Intravenous antibiotics again which isn’t going to be too good in this heat.

Update 16th March 2009

Ryan has been very poorly over the weekend. Today he has started on a course of two intravenous antibiotics for two weeks. His latest cough swab showed he had a heavy growth of Pseudomonas and he obviously wasn’t coping too well. We have managed to keep him out of hospital as I’m doing the IVS at home.

Any extra post would be most welcomed as he will be off school for the time being.

Update 1st March 2009

Ryan has had his Glucose intolerance test and another Liver scan. He has an appointment next week when we are hoping for the results.

Ryan has missed quite a bit of school in the last few weeks as he has been feeling poorly with a sore throat and has a chest infection. He is possibly starting a course of Intravenous antibiotics next week to get him back up again.

Thank you to Tez who sent Ryan some lovely gifts and a letter. Also thanks to Post Pals who sent Ryan a gift and a lovely Teddy for Jasmin it was very kind of you.

Please could anyone that writes or sends gifts enclose their Email address as Ryan is not one for writing thank you letters except on a computer!

Update 17th January 2009

Ryan's annual CF review went well. He has put weight on (another xbox game earned!) and grown in height. All bloods were normal apart from his liver function which we were expecting as he has mild liver disease. Another liver scan has been asked for to see if this has progressed. Ryan's lungs remain colonised with Pseudomonas, which is upsetting as this bug damages the lungs quite rapidly if left untreated. It was decided that the pseudomonas would only be treated with intravenous antibiotics if it became a moderate to heavy growth (determined by regular cough swabs) or if Ryan becomes unwell. Ryan remains on nebulised antibiotics to help keep the pseudomonas at bay. This will be regularly reviewed by the CF team. Ryan has mild clubbing of his fingers which is a side affect of cystic fibrosis. He has to go for a bone density test and Glucose tolerance test as he is now at an age where some are diagnosed with Diabetes and osteoporosis. But we will deal with this if and when Ryan is diagnosed.

So the review was a bit mixed with good weight and height gain and a few lows. As usual Ryan remains his happy go lucky self and straight after the hospital we were in Tesco's buying his XBOX game as a reward!

Ryan's next hospital appointment is at the end of this month at another hospital as we have to plan for his transition to an Adolescent CF Clinic.

Jason and Shaun have their Genetics Counselling and tests next week to see if they carry one of the two genes that Ryan has... fingers crossed they do not. 

Update 15th January 2009

Ryan had a great birthday and Christmas and he was very well.

Today he has his annual CF review so fingers crossed all is ok.

Wow what a lot of post Ryan and his siblings received for Christmas! Special thanks to... Post Pals, Julie, Santa’s Elf Helen, Rachel, Christmas Elf Alison, Howard Elves, Sarah, Carl and Mason, Shaun’s Elf (sorry no name was given), Alina, Hwee Hoon and Aled G and family. I hope i haven’t missed anyone out and apologies if I have... I will be thanking those who sent their email address personally. Jasmin was really pleased with the cards and letters from the reindeer too, she squealed with delight! I have sent photos of the children for the gallery. Thanks also for Ryan’s birthday cards and gifts! 

Update 8th December 2008

Ryan has had 2 weeks off school due to his recent chest infection but he now appears to be on the mend. This course of IV antibiotics finishes tomorrow. Fingers crossed he will go back to school the next day.

Ryan is very much looking forward to his 15th Birthday and Christmas.

Update 25th November 2008

Ryan started a course of two strong Intravenous Antibiotics last night for a heavy growth of Pseudomonas. He just can’t shift that infection and he is feeling very poorly. He is off school again and possibly will be for the next two weeks. I’m certainly not sending him back too soon with all the bugs going around at the moment. 

Any extra post or smiles would help lift his spirits and hopefully we can get him back fighting fit in time for Christmas.

Update 5th November 2008

Ryan is doing very well at the moment considering he had flu a couple of weeks ago. He has a hospital appointment this week so fingers crossed all tests are clear.

Update 2nd September 2008