C/O 26 Beaumont Road
Nuneaton
Warwickshire
CV11 5HD
United Kingdom

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

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Seraphina I's Parents/Guardians

Caroline

Seraphina I's Siblings

Joseph 25/1/1998 likes Naruto,reading,comics and video games. Aimee 24/3/1999 likes likes Hello Kitty, Club Penguin, Music, moshi monsters, card making, reading. Lydia 2/8/2000 likes books, moshi monsters, drawing and crafts. Eve 20/2/2003 likes Moshi monsters, reading LOTS and animals. Samuel 30/7/2004 likes moshi monsters, Bin Weevils Mario, Sonic, playing on his computer.

Seraphina I's Interests

Loves watching TV/DVDs, especially Mickey mouse clubhouse, Dora the Explorer, Little Charlie bear and Thomas the tank engine. She's currently obsessed with cats, adores being read stories and going on her ipad, likes butterflies and donkeys, splashing in the bath and bubbles, likes Mickey Mouse and Minnie, Pluto and Goofy and all things Disney.

Seraphina I's Favourite Colour

Purple and Yellow

Is Seraphina I able to read?

No

Is Seraphina I able to use hands?

No

Is Seraphina I visually/hearing impaired?

Yes

Does Seraphina I suffer from any developmental delay?

Yes

Use of hands?

Seraphina has no use of her hands.

Please do not send any Halloween themed gifts.

Story written 2010

Seraphina was born by emergency section at only 25 weeks gestation and weighing a mere 760g. She fought hard and after 4 and a half months in Special Care she came home. The stay was short lived however, as after only 3 days she suffered a massive aspiration and was rushed to Intensive Care with an aspiration Pneumonia. It was there she was diagnosed with chronic Gastro-oesophageal Reflux. She was put on medication and fed by NJ tube but this didn’t help and so she had a fundoplication operation and a tube inserted a few months later. It was also discovered she needed supplemental oxygen. Since then she has put on weight nicely and developmentally progressed well mentally, but a lot more slowly physically. She was diagnosed with Cerebral Palsy (spastic diplegic) just after she was one.

Things were fine until she was 18-21 months old when she stopped making progress and lost all her speech, she became withdrawn and avoided eye contact. She lost the ability to walk and then stand.

She was hospitalised for almost 3 months last November with a twisted bowel /bronchiolitis and Pneumonia. She ended up on a breathing machine over Christmas and New Year and once again we didn’t know if she would pull through. However, she surprised us, and after emergency bowel surgery and a period on TPN she was able to come home.

She is in and out of hospital quite a bit with chest infections and bowel problems which is something she finds really frightening and she is on lots of medication (currently about 25 doses a day).

Recently we have found the reason for Seraphina's loss of skills. She has been diagnosed with Rett Syndrome - a horrible Genetic disorder which mainly affects girls. She cannot speak anymore but is beginning to communicate using eye-gaze and will let you know in no uncertain terms what she likes and dislikes. She also has a very infectious giggle and the most wonderful smile which lights up the room!

Update 27th February 2012

Seraphina was admitted to hospital 9 days ago. When we got admitted Seraphina was in a poor state, she wasn't tolerating feed or dioralyte, she had diahorrea and every nappy contained blood. She was sweating with pain and nobody really knew what was going on. She had bloods done and was out onto IV fluids via her port. After a chat with the consultant they went to book an endoscopy and colonoscopy for the 1st March. Once they realised how much pain she was in they decided to do it on Tuesday afternoon.

She went down to theatre and I got given the familiar pager which would go off when she was in recovery and they were ready for me.

When it went off I went down expecting to be called straight in to see her. I wasn't though - instead I was called into a private room to talk to the surgeon who had carried out the colonoscopy. That's when alarm bells went off.

He explained that their findings had been extraordinary. Seraphina’s colon was visually like bubble wrap, so close together were the ulcers and sores and the surface of the colon which had bubbled with gas and inflammation. The surgeon was so concerned about doing a biopsy that he phoned the gastroenterologist to check he still wanted one given the state of her bowel. He did. Unfortunately when he took the biopsy he described it as 'trying to biopsy cling film' and her bowel perforated. He said that Seraphina’s bowel was so bad that it would never recover and she would not be able to be fed via tube again... it would be TPN only (which is feeding via a vein).

In the days that followed Seraphina required more and more morphine and other pain medication had to be added in. She bled out of her gastrostomy, her heart rate dropped very low, so low in fact that unknown to me then they had to call the resuscitation team who were sitting in a side room in case they were needed for a few hours.

Saturday was an exceptionally bad day… her bowel spontaneously perforated again and we were told it could happen again at any time. For safety's sake she was already on multiple antibiotics.

Today has been better - she's still on morphine but not needing as many boluses and has sat up in her chair for a while.

The plan is a long one. On the 22nd of March she will go back to theatre to see if the weeks on TPN has improved her bowel any. She will have an endoscopic evaluation, something called a wireless camera, which is a little capsule which will travel through her G I tract taking photos every 2 seconds (this is the only way they will be able to see her small bowel as it was too fragile to look at endoscopic), she will have a laperoscopy and CT scan to look at the outside of her bowel. Depending on the results of these tests it is thought she may well be better off without her colon and so she will have a colectomy and a stoma placed.

I can reel all this off quickly now but on Tuesday evening I was in shock... total shock. I was also so angry, having been told that the prognosis/ life expectancy was now poorer than we had thought before. If the cure for Rett was found tomorrow it would still be too late to reverse the damage it had ravaged on my little girls insides. So we are in another 3 weeks until surgery and then they have said around another 7 weeks afterwards… a loooonnnng time.

When she comes out she is going to be spoilt... she has wanted a cat for a while and so by hook or by crook I want to get her one. Bless her, even on the worst days when lying lethargic and worn out from pain, the nurse said to her "are you getting a kitten?' and her eyes lit up and she smiled that captivating smile that only Rett girls seem to possess. Somehow we will find the money to buy her one. It’s the least we can do after all she's going through.

Thank you for all the precious people who have supported us through this week. Thank you for all the prayers too… it's so good to know that there is such a cry to heaven going on for my gorgeous girl.

Update 18th January 2012

Seraphina had a good Christmas and new year despite her tummy being poorly for part of it. We were all very glad to be home together.

Since then her tummy has been causing her more distress resulting in three bowel bleeds last week. The nurses have come out to see her regularly and believe its time we had morphine available at home to help her cope with out breaks of pain. It also seems her port-a-cath has stopped working. We were seen at Sheffield yesterday as a result of her bleeds and not being able to tolerate feeds again. She has been given more steroids and pain relief and we have signed consent for her to have a colonoscopy and endoscopy with biopsies and her port changed. They are also going to arrange for her teeth to be looked at under the same General Anaesthetic. We won’t know for definite until after the surgery but the Gastroenterologist believes that Seraphina’s residual colon is just not working any more and has mentioned that the best thing may be to remove it all together. However, this is a big operation and so we are understandably very anxious about this possibility. We have been told her surgery will be in the next 2-4 weeks and so are just waiting for the call now to go in.

A big thank you to the children’s’ Christmas Elves for making their Christmas extra special. Thank you also to Lydia’s Elf for the lovely fluffy socks and foam bath for me, both were put to good use!

Update 10th December 2011

Seraphina has been in and out of hospital a lot recently. She has been diagnosed with a type of inflammatory bowel disease which means that she has been bleeding in her bowel. She has had a blood transfusion and a little while being fed by TPN. Now she is tolerating half strength feed. She’s also on long term steroids and immunosuppressants to keep the inflammation in her bowel down, which at the moment require weekly blood tests. Despite this she has a lot of tummy pain and diarrhea episodes which leave her drained. She is also very susceptible to infection now which means we have to be very careful with her and if she gets a temperature take her to hospital straight away. She has also developed a hernia over a past bowel operation site and so will need that repaired in the New Year.

On a positive note, a couple of days ago Seraphina took some steps all on her own which we are really thrilled about as she lost the ability to walk at 18 months when she went through Rett syndrome regression phase... what a STAR!! :)

Update 9th October 2011

Seraphina’s pain has been well controlled most of today. The plan is bowel rest and iv meds and to try dioralyte again on Monday.

Update 7th October 2011

Seri is now on continuous pump of morphine as iv bolus did nothing. X-rays showed grossly distended bowel and what they think is a perforation. We have got to go for more x-rays.

Update 5th October 2011

Seraphina went to theatre, the consultant said her colon is grossly abnormal; her entire colon is inflamed, raw and bleeding. It looks like we are going to be in hospital for the long run.

Update 3rd October 2011

Seraphina was rushed to hospital; her HB is so low due to internal bleeding that she is in danger of a cardiac arrest. She is being admitted for emergency transfusions and investigations. She is extremely frightened and anxious to the point of being sick when anyone comes near her.

Update 21st June 2011

Seraphina has been home for a month now. We are still having ongoing issues with her gut. She has been diagnosed with chronic intestinal pseudo-obstruction and we now have a rectal tube that we have to use on a regular basis to 'deflate' her bowel. The long term plan is to have a third stoma placed in her bowel, but this is a big operation for her and so she needs to be a bit stronger before we do it. She is rather skinny and gets tired quickly at the moment but she is still smiling and that’s the main thing.

I have updated her blog now so apologies for those who were waiting for an update.

Update 11th May 2011

Seri is in theatre now as she has 3 twists in her bowel. Please say a prayer for her.

Update 10th May 2011

Seraphina is very poorly and on the list for emergency bowel surgery tomorrow.

Update 9th April 2011

I just want to say thank you to everyone who has been supporting Seraphina as we go through this bad patch in and out of hospital. The cards and bath ducks have really cheered her up even on the most poorly days.

We are at the Evelina children’s hospital next week in London. We’re just praying they have some good ideas about the next steps in treating Seraphina so that we can have her back to her lively bubbly self soon!

Update 10th January 2011

It has been a bit of an up and down month. Seraphina had her operation at the end of November (30th) and we had high hopes for the outcome, but unfortunately she had a lot of pain from the procedure which is unusual, and when the casts on her legs were changed she only had the new ones on for 48 hours before she was at the stage of needing Morphine for pain. We had to have the casts removed as her feet were swelling up and when they were removed we found that she had grade 3 pressure sores on the front of both ankles which were weeping and bleeding. We had to dress them and change the dressing every day which she found very sore. Then she unfortunately had an allergic reaction to one of the dressings which meant that she had hives all over the front of her ankle too which still haven’t quite gone. The operation was not successful and so unfortunately she is booked for another surgery (which they said should be this month) to cut through her Achilles tendons and also open up the back of each calf and cut through the muscles there. She will then be in plaster for 4-6 weeks. We are praying that this goes well and we don’t get any more pressure sores.

On the positive side, we all managed to spent Christmas together which was wonderful considering last year was spent in ICU. Seraphina even got the hang of using her hands to unwrap her Post Pals presents!!! We thought she would get a bit overwhelmed and so only gave her a couple to begin with, but she started screaming and when we asked her what was wrong she took my hand and pointed it in the direction of her Post Pals presents... so I said ''do you want more?'' and she clapped! Clearly she was getting the hang of presents VERY quickly this year!

Thank you to the children’s Elves for making this Christmas extra special, particularly the person who bought Lyida’s Jacqueline Wilson collection, Sam’s RAF Elf (who according to Sam drives very fast planes!) for the Where’s Wally? books and slinky, Becs who made Aimee’s Christmas with all the card making gear and Seraphina’s posties/elves for the littlest pet shop toys, Peppa pig book, bath ducks etc etc, not forgetting the lovely woolly socks from Finland! Also a big thank you to MY elf for the lovely chocolate truffles! Definitely made my Christmas!

All thoughts and prayers would be appreciated for Seraphina’s upcoming surgery and also that she manages to get rid of the bad chest she has had for about 6 weeks now which makes sleeping difficult due to coughing/needing suction.

Update 25th November 2010

Seraphina has had a better month health wise and now we are trying to keep her fit for her surgery up in Sheffield on the 30th November.

We went to the Rett syndrome conference last Saturday with Seraphina. It was good to meet other children with Retts and learn more about Seraphina’s condition. Seraphina was parked in her wheelchair next to a large Christmas tree at one point and discovered a fascination with large shiny baubles which she was trying to kick into her wheelchair with her feet!! Both she and the few people that saw her thought it was very funny!

Her sister, Lydia, had her brain scan yesterday (24th) so we just have to wait for the results now. She has been very much cheered up by the couple of cards she had so thank you very much for those.

Thank you to Meri M from Slovenia for Seraphina’s story book, the people who have sent birthday cards ready for November 27^th, and the children from the Army base in Riteln, Germany, for their hand made booklet with Peppa pig picture on.

Update 8th November 2010

Unfortunately we are going through a bit of a tough patch at the moment. Seraphina seems to be getting one bug after another and is getting really run down. She has caught another bug over the weekend and is very chesty and miserable and requiring a lot of suction.

We did make it to Sheffield - she had her chest drain attached and we saw the Orthopaedics consultant - the reason for the pain in her hip for the last few months is that it is partially dislocated! Her muscles and tendons in her legs are now extremely tight which is also causing her pain and so she is booked in for surgery and serial casting on her legs for 8 weeks. We should get the appointment through in a couple of days but he said it will be for sometime this month, so it looks like she will be in plaster for her birthday.

The other news we have is Lydia (who already has scoliosis and Syringomyelia) which causes a lot of pain, has to have a brain scan on the 24th November as her legs are also causing more problems and we finally got to see a neurologist who believes she has Cerebral Palsy!! This was quite a shock and Lydia is a bit tearful about it at the moment.

There are a few other heath issues going on with Seraphina too and to be honest we are struggling a bit so your thoughts and prayers would be appreciated.

Update 3rd October 2010

This month has ended better than it started. The first part of the month Seraphina had to be taken to hospital as she had seizures that wouldn’t stop and so had to be given a drug to stop them. Unfortunately, she had a urine infection which triggered them off and while she was fitting she aspirated and so needed antibiotics to protect her from a chest infection. Her oxygen requirement doubled at this time which was quite scary for both of us. She also developed a different kind of seizure to add to her repertoire and had some sort of collapse and we are still waiting to see what the Consultant thinks may have caused it. She had only just got over the seizure episode when she needed to be checked over again, as she came down with a horrible tummy/fluey bug which meant that she couldn’t be tube fed her normal milk, but had to have dioralyte for a while and was really quite poorly with it. Thankfully she has all but got over it now but it has really knocked her health-wise so she is a little weak and wobbly at the moment. We are hoping that next month is a bit better health-wise for her.

Thoughts and prayers are appreciated for 21^st October when she goes to see the neurologist and on the 25^th when we are in a different children’s hospital for her to have a permanent chest drain valve fitted which hopefully should help with gas build up. Seraphina gets very very scared and upset about going to hospital now so all prayers are appreciated.

I am just in awe of Post Pals. The difference it has made to Seraphina (and me) is immeasurable. It is so lovely to see her little face light up when she sees an envelope… she is really getting the idea of this now and can’t wait for me to open the post for her. It was also lovely for Samuel to get a present as it is all too easy for siblings to feel a little left out at times when caring for a child with such complex needs, so thank you for making his day.

Thanks to Lilli, Isabella and Elouise for the lovely postcards from Hong Kong and also to Jane Fawcett for the postcard… what fantastic pictures of your cats! Thanks to Percy for telling us about his wonderful adventures and also to Sarah G for her wonderful letters that all the children look forward to me reading out! I’m afraid Seraphina did laugh quite a lot at you getting all wet and muddy though, especially when we kept repeating the word ‘splosh’ to her… she thought it was quite hilarious! A big thank you to Samantha for Samuel’s Helicopter craft kit… he loved it! And also a thank you to W. Krul for sending Seraphina the gorgeous yellow butterfly toy which she has become quite attached to!