Our Pal - Meggie D

Story written 2012

Megan has severe uncontrolled epilepsy (she does not go more than 4 minutes without some sort of seizure activity), congenital hydrocephalus (shunt in situ), severe brain damage to the left side and partial to the right, cerebral palsy mainly to the left side, VSD, T.O.F., visual impairment, sensory processing disorder, and global development delay.

Meggie was diagnosed with hydrocephalus before birth. The chances of her surviving birth was less than 20% and we were told that should she survive her prognosis was very poor, that she would never be able to walk or talk, she would be blind and severely mentally impaired. Meggie was born at 33 weeks weighing 4lb, although the fluid in her head took a third of this! She had a cone shaped head and from day one was stared at by other parents / grandparents in N.I.C.U. At 24 hours old she was blue lighted to Great Ormond Street Hospital as it was discovered she needed urgent surgery to repair  tracheostomy fistula and again we were warned that she probably would not survive the journey, let alone the operation! However they didn’t reckon on Meggie’s strength, she not only survived that operation but also the operation a couple of days later to put a shunt into her head.

After a couple of weeks Meggie was transferred back to her local hospital, but unfortunately her condition kept worsening and several times she had to be resuscitated. At one point even a DNR was signed because it was felt her little body had had enough! But Meggie thought otherwise and, thanks to a doctor trying a new baby milk with added meds, Meggie turned a corner!

Over the next months she was regularly seen by different Doctors at GOSH as she is visually impaired, has a heart defect, spine defect, feeding problems. It was on the way home from one of these appointments that Meggie had her first seizure, quickly followed by several more. She was 8 months old! She was later diagnosed with cerebral palsy.

Meggie learnt to sit on her own at the age of 22 months. At the age of 4 she learnt to walk with a walking frame and at the age of 5 she took her first steps on her own!

She has always loved to sing and dance… first shuffling on her bottom and later holding onto the television! She even taught a ‘non verbal’ friend in school how to sign / sing JLS’ song ‘Everybody in Love’ and regularly entertains the staff and pupils at the special needs school she attends!

Meggie is 10 years old now. She totally loves JLS and says she is going to marry Aston! Unfortunately because her seizures are so bad we cannot take her to see JLS in concert or even to a book signing. She has so many seizures everyday and a recent telemetry study showed that the longest she goes without a seizure of some kind is 4 minutes. She has already ‘statused’ twice and we know we are on borrowed time as there is little that can be done as surgery would not work as she has so many ‘pockets’ of brain damage from the hydrocephalus etc.

Meggie is a very sociable little girl and loves chatting to people… even if she does ask exactly the same questions every time! Meggie loves playing ‘Doctors’, it is the only game she can really play (although she used to enjoy playing on her brothers DS), as she is only really age 2/3 years mentally.

Every one that meets Meggie never forgets her though, she is such a character and loved by so many! I think Meggie would be so happy to have ‘post pals’ as she loves people! But also for her family, mainly her 2 brothers, who miss so much of ‘normal life’ because of Meggie… yet they have never, ever complained. Last Saturday they were all ready to leave the house to go to town to watch Santa arrive and the Christmas lights switched on, but Meggie had a seizure in the doorway lasting 33 minutes. They just quietly took their coats off and got her bean bag for her to be comfortable in and sat with her.

Update 24th August 2016

Meggie is having a very ‘up and down’ time at the moment. She is not coping very well with school holidays and lots of family birthdays, so she has been having a lot more seizures every day! Because of this the family are having to have a very quiet holidays and are unable to go anywhere. This of course has been a bit unfair to Liam and Scarlett, but being the fantastic children that they are they have said they would rather stay at home and play with Meggie than to go on trips without her!
Meggie is still only age 2 – 4 yrs mentally and only plays ‘doctors’ or ‘vets’ with every doll and animal she has! She still loves monkeys, although she loves any cuddly toy! She loves listening to music … any music, and has the ability to learn and remember a song she has heard just once yet she cannot remember a person she met the day before or what she did! 3 years ago she was lucky enough to win a ‘meet and greet’ with her idols JLS, unfortunately the following day she had a huge seizure that wiped out her memory of meeting them. Then 2 days ago, after a particularly nasty and long seizure, she suddenly started telling everyone she meets that ‘she met JLS yesterday’!
Meggie loves receiving post from her Post Pals and sends her love to you all!
Liam is still a very loving, caring brother to Meggie and is about to start secondary school.

Scarlett is now 6yrs old and although she is very petite with blonde hair she is a Tomboy through and through! Like her brother loves Star Wars, Pocomon, lego and collecting Trump cards.
Like Meggie both Liam and Scarlett all love ‘making’ things and cooking together. Although Meggie is not very good at it, they both help her and let her think she has done it all herself!
They all love receiving their post and send a big ‘thank you’ to everyone!

Update 28th January 2016

Meggie has had a very up and down year with some very nasty, life-threatening seizures where we have thought we would lose her! She still has several ‘drop’ seizures every day, as well as her usual ones, but is always happy and smiling. Her mobility has worsened and she relies on her wheelchair a lot more. Although she is almost 14 yrs old, she still only has the mental age of 2 -3 yrs. She cannot write any more as she lost a lot of her skills and memory after some very bad seizures. But she does like to ‘draw’ pictures and colour (although it is more a patch of colour over a picture) and she enjoys it. She only plays ‘doctors’ and she loves snuggly cuddly toys, especially monkeys, she collects them! Meggie does not eat any sweets, only chocolate. Meggie loves all the cards, letters and parcels she receives from Post Pals and loves it when we read them to her. Thank you.

Marley is now 16 yrs old and, whilst he has had some lovely gifts over the past couple of years and is very grateful, we feel he should be removed from Post Pals.

Update 10th December 2014

We’re having a hard time right now, but I just wanted to say a big thank you to everyone for the post… it has made a huge difference to my babies. I’d also like to say a special thank you to a lovely lady called Regina and her niece… the Angel that arrived today was perfect and I needed her today. Thank you so much, she’s hanging in our room.

Update 13th October 2014

Hi everyone, the weather has caused chaos in my house and my two lung babies have been ill. Meggie has been up and down with seizures and sensory issues (never a good time of year for her) and my other children have also needed extra mum time. I’ve been ill too on top of it all. However, we have had some lovely post and it has really brightened things for my babies. So, a big, huge thank you to you all. Meggy has even taken part in a road safety exercise at school using her light up umbrella that Post Pals sent her! Thank you again everyone.

Update 1st June 2014

Meggie was admitted to hospital after she statused a couple of weeks ago. She was resuscitated but it has left her unable to walk now and barely able to move. She has lost a lot of her memory and is now ‘into’ Noddy, Dr Ranj and CBeebies… she sadly barely remembers JLS.

We are now living on a ‘one day at a time’ with Megs and also dealing with her older sister who has been diagnosed with a lifelong disability and is unfortunately unable to attend school and do her GCSE’s anymore. As a family we are truly suffering at the moment.

Update 22nd November 2013

My children, Meggie D, Scarlett, Liam and Marley, have had some lovely post from some special Post Pals. We are going through some things at the moment and I haven’t had time to personally thank you all, but you really have cheered my children up, so thank you.

Update 28th September 2013

Meggie is in hospital at the moment as she had a 38 hour ‘status seizure’. It was a bit touch and go but she is on the mend thank goodness! We are waiting for the results of CT scan / X-rays / shunt revision to see whether she will be transferred to GOSH or just her meds reviewed.

Thank you for everything sent to Meggie and her brothers and sisters, they make such a difference!

Update 30th March 2013

We had some news regarding Meggie’s health a couple of weeks ago from her GOSH neurologist that was quite upsetting. Her health is deteriorating and her seizures are worsening (she has had 6 in 2 hours this morning already). She is also losing a lot of skills she had developed, which is upsetting for her as well as us.

However, the next day she was sent a beautiful JLS necklace from a Post Pal! Thank you for the post sent to Meggie and her siblings, she has had some lovely mail which has always seemed to arrive when she’s having a particularly bad day.