Tag Archives: baby

Leya’s Journey Not for Profit Organisation

Sorry I haven’t updated much we have been busy getting settled in at home and just being a family again!! But I just wanted to do a quick update on the NFPO and what we are fundraising for. 

So Leya’s Journey is now all up and running as a not for profit organisation with its own bank account and paypal account. This basically means that we have a committee that oversee all of the fundraising events, can apply for grants and have control of the bank account. 

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So what are our aims?? 

Our immediate aim of the group is to raise money to help Plymouth CHDU purchase 3 sets of sensory lights for use on the ward (currently they have 1 set between 4 beds).While Leya was in CHDU she was attached to loads of wires and monitors so it was impossible to move her and these lights were a godsend to keep her calm while she was having a coughing fit and to keep her occupied while me and Dan would take a break. We would love for the unit to be able to have one per bed so that the little ones do not have to share. We would also like to donate some money to the Plym unit where Leya had her operations. There is a waiting room for parents to sit and watch TV and also and area for the older children to play once they have recovered a little. This area is 100% dependable on donations to keep it running!

We also want to fund Makaton sign language lessons, firstly for Leya’s  immediate family but hopefully we will be able to have a pot of money so other parents/children in the community will also be able to learn! As Leya’s recovery is still a bit of an unknown we are unsure of what items she is going to need at this point. We know that she is going to need speech therapy in the future but she may face other problems when the tracheostomy is removed (including when this will actually happen). I will be keeping this blog as well as the fundraising page up to date so if things change and our goals change we will adapt our goals to help Leya in any way we can. 

But this is were we are dreaming big!! Our LONG term goal is to able to provide a place in Bude for disabled children to go, currently we have to travel a long way to attend groups, sensory sessions etc this is a hassle as the amount of equipment we have to take is a lot but also we are unable to travel with Leya alone so we need someone with us. I would love to have somewhere in Bude where parents could go without to much upheaval and where parents feel safe and happy for their children to attend. So we are going to dream big and see what we as a community can do!!

If anyone would like to raise money for Leya by taking part in a sponsored event, organising a fund raiser or just donating how ever much you can then please dont hesitate to contact the committee by email: leyasjourney@hotmail.com and we will forward a short application form to you.

You can keep up to date with Leya’s progress at her facebook page: https://www.facebook.com/Leyasjourney?ref=bookmarks

You can see how the fundraising is going and events being held at: https://www.facebook.com/groups/1428626847416602/

And you can donate via our paypal account: https://www.paypal.com/uk/cgi-bin/webscr?cmd=_flow&SESSION=cvyjuaZDWjsfi_JSVNokaderT6ICJco2Y5RfPUITqWJvGzptyvGOI8LeZlu&dispatch=5885d80a13c0db1f8e263663d3faee8d69a70501aadbc2ff6a1e7e8cc0df6b0b

Thank you in advance for any donations, events and help it is all greatly appreciated!!! 

Lots of Love 

Dan, Casey and Leya

Leya 2

 

 

Finally home….But only for 2 Days 😢

So as the title says we managed to get home on Monday YAY!! So we got the news that unfortunately it could take anything up to 2 months to get Leya’s humidifier sorted and we could stay until then (HELL NO was my answer) so we were sent home with extra nebulisers till this is to be sorted out!!
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So I rang mum (we didnt have the car because of the MOT fiasco!!) to ask her if she was busy and if she wasnt could she come and pick ALL 3 of us up 😃 commence the shouting down the phone!! At first she asked if I was lying then put me on speakerphone to tell Leya’s Great Grandad (g-dog) and her Uncle Kyle and Cameron to say they were happy was an understatement!!

So mum arrived and her and Dan took our things to the car (there was a lot after nearly a month of being in here) and of course there was no parking spaces near but in car park E the furthest away!! They filled the car then the waiting began….and carried on and on and then finally we got Leya’s 2 carrier bag full of medicines (I would like to state here that my daughter is not a avid drug user but they supplied us with two weeks worth 😜). So we could finally escape.

We got downstairs and I swear both myself and Leya hissed and started to burn when we came into the light (yes a vampire comparison) we had been in there for so long that the light (it was a dim day) was just far to much for our eyes!!

So we arrived home (sorry the picture is dark) to the family who couldn’t quite believe we were really home. Well Tieran the most as they didn’t tell him we were coming home so his face was the best 😁.

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Let the first night commence…all was back to normal Dan sleeping through the night and me not sleeping a wink just incase I missed Leya crying but once again our little piglet was fantastic and slept all the way through!!

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So we were settling in, sorting out our new room, getting used to the equipment (your used to seeing it in hospital but its looks strange at home), teaching everyone how to care for Leya and the new sounds she makes all was good!!

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Wednesday came and we went and spent the afternoon with our friends!! Which was amazing to catch up and see how much the not so little ones had grown!! Leya took a liking to Ethan and his arm which she decided tasted amazing.

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So this is where the trouble starts. I take a walk to morrisons (in our new buggy which is amazeballs) to get some tea, Leya decides that she was to have a blue episode and stop breathing 😩 so I calmly suction her and helped her to calm down and she starts breathing again (i though I was going to have to do an emergency trache change) so i get home and she has another one not good. This is when the sinking feeling starts to occur, have they diagnosed the right thing, have we put her through all this for no reason??? So to be on the safe side we decide to change the Trache just in case its blocked. It was then we saw the Granuloma, for those of you who are thing WHAT THE HELL IS THAT?? It is basically Leya’s body trying to repair the hole that shouldn’t really be there, no biggy we put the new Trache in and called HDU to see what we had to do.

The ENT want to see Leya just to check all was ok, so of we went to Plymouth thinking we were heading for just a day out, how wrong was I.

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Leya was seen by the ENT team when she arrived, they cortarized the granuloma and gave us some steroid cream but this is when she decided to go blue TWICE in front of him. Bring in the Peds consultant… “We are not happy for Leya to return home we would like to observe her overnight”

Mum and Cameron left with the new pump (yes this is the day one of her suction pumps decide to break) this is when my daughter decided that in front of the nurse and just for fun she would have quite a few apnea episodes, go blue and drop her oxygen sats!! Que me feeling sick to my stomach with worry as to what is causing my little girl to struggling to breathe again. On goes the humidification and back to our second home of HDU.

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So bringing to story to a close we have been told we are back to square one, they think someone else is wrong but they are not sure what or where. She has had a chest X-ray which is clear, loads of blood test (i cried as it was a lot and her poor little hand is now bruised) and more tests to come.

Today she has been put on IV fluid as she has started to throw up her feeds again and has lost weight so she is dehydrated. We have been put into a cubicle as she has a viral infection (once again dont know what or where) which could be whooping cough so we have to be on the safe side.

So until we find out more or what is wrong with Leya and she has a had a prolonged period of keeping her oxygen up, not going blue and breathing all the time we will be staying in hospital. So as Dan worked out today our little poorly piglet has been in hospital for more than a third of her life already 😢

Oh and just to make life a little more exciting for us someone decided to reverse into our car and take the paint work and scratch our back bumper, just another think I need to be dealing with right now NOT!!!

So we are hoping that someone up there is willing to give us all a break and get us home again (for a long time) and let nothing else be wrong with our baby girl.

Lots of Love

Dan, Casey and Leya xxx

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First #Leyasjourney Fund Raising Event

So as I have previously blogged my amazing friends and family had arranged to do a car boot as the first fund raising event for #leyasjourney. Well today was that day and they awoke to rain 😢😩 this is not what we wanted!!

But this soon cleared up and the sun came out and stayed out for most of the day!! So Laura and Kirstine arranged this first event as and you may recall I posted a picture of Laura’s lounge which I thought was the only place storing the items donated but I was wrong!! They were being stored elsewhere too!! So the below photo was only some of the fabulous items donated!!
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It took a big van and a group of the most amazing people to help set up the car boot!! All these items were shown off with a spectacular sign donated to Leya’s cause by Jag Signs which will appear at all her fund raising events!! So they were all set up ready to go!!

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So the day went amazingly, I checked in with my mum (who also helped) and she said people were being so generous, some where buying items and some where just donating. I wish I could have been there just to hug every single person who is helping my baby girl. Dans parents also ventured over to see how it was going and got quite emotional. The day was apparently full of tears and laughs which describes Leya’s journey so far so very apt!!

So they got to the end of the day with just a little unsold!! This will be sold at a later date (still deciding on another car boot or a different event).

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All of Leya’s Jedi Masters (these are the amazing, supportive people who are helping her in her life journey, most of you will understand the reference) gathered at my mums house to count the money raised!! I will show you a picture of my mums reaction before revealing the total!!

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So as you can gather from my mums face it was more than we could ever have imagined. So then the phone call came through too me!! So im on loud speaker saying Hi to everyone one and a massive thanks ect then get told the total of a huge £453.22!! I may have swore a little then I was speechless (yes I know first time for everything 😉) this was huge and pays for a lot already after one event!!

So we sent a little picture to everyone to show how much it meant to us 3 here at the hospital!!

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So the total was then posted on her fund raising page, my facebook, Leya’s facebook and a lovely family member Maria Long then told us she would make up the difference and take the total to a whopping £500!! I can not express how grateful my family are to everyone who donated to help make this possible and to everyone who brought the items available!!

The money that has been raised so far will help us so much and is from only 1 event!! There are many more too come!! Or if you would like to hold your own event or even donate then please join Leya’s facebook page: https://m.facebook.com/Leyasjourney

Or the fund raising page: https://m.facebook.com/groups/1428626847416602

And if you could share this amongst your friends and family to help raise awareness of this not very well known condition it would be muchly appreciated!!

Oh and we also want to say a massive thank you to Chris and Sandra Heard at Pendeen Car Boot in Stratton for allowing us to use their facilities to do this event!!

So as I have said before a massive thank you but this just doesn’t seem enough but its all we have to give atm till we get home and we can squidge you all!!

Lots of Love

Dan, Casey and Leya

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Being Overwhelmed… And getting ready to GO HOME!!

So since we last spoke we have had our discharge meeting, been changing Leya’s Trache and had loads of support and gifts from friends, family and even people we have never met.

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So our first Trache change came for both of us, this was scary, upsetting, hard and massively strange. Dan took the lead and did the first one and was amazing at it. This was the first time we had seen her Stoma let alone pulled the tube out and put it back in again!! It took a couple of times to get it back in but Dan didn’t panic and managed to get there in the end but then she was making a funny noise and we remembered about the introducer. This is a tube that goes inside her Trache so that it doesn’t bend as you put it in but then once in place blocks her airway. Dan quickly whipped it out and all was well again.

So the day after my turn!! I hated it, seeing this whole in my daughters throat again was horrible, she is staring right at me crying while I am putting it back in but it went in lovely but I too forgot the introducer!! Ali our amazing nurse did tell us it would get easier and that we would remember. With all this is wore our little Piglet out!!

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On Monday Leya had her first immunisations (very late we know, we have been rather busy 😃). So she has been a little grouchy, sleepy and of her food which isn’t what we need. She has been but on Infatrini which has even more calories and has put a little more weight on which is a step in the right direction!!

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We have been in our very own cubicle since Sunday now and have been taking in turns to stay with Leya to get used to the noises or lack of them so both me and Dan are shattered as neither of us have really been sleeping. It is rather quite during the day but now Leya is not attached to anything we can go for walks and she loves this as she is a right nosey little piggy!!

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So the discharge meeting was on Tuesday and this was to discuss what we needed when we got home, Leya’s reviews and what was left to do before they could send us home!! It was decided that if everything was in place we could go home early next week!! YAY was our first thought then OMG can we cope???!!! We discussed what equipment we would need and it is A LOT!! We will be coming back every 3 months for a review with her ENT and Paediatric specialist.

This meeting was also rather emotional for us as we were told about Leya’s recovery stats. There is a 50/50 chance that her vocal cords will repair themselves. This was hard to hear especially when we thought that long term meant 5-10years but unfortunately when she is 2 or 3 years old if they haven’t repaired we will then have to make a decision on whether or not an operation on her vocal cords would be the best option.

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Finally a meeting was held for Leya’s Journey Not For Profit Organisation. We are in the process of setting this up to raise funds for items that Leya could use, Makaton for our families, friends and young children of Bude to help us be able to communicate with Leya but to also give back to Derriford hospital who have been amazing in diagnosing and treating Leya but also keeping me and Dan sane!!

We have also received gifts from loads of people and some very generous gifts also so we want to say a massive thank you to everyone who has made us feel loved, supported and just generally holding us up!!

Some of friends have also arranged a car boot with many things being donated to the point it has taken over one of their houses!!

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So that has been our week so far, we are currently having our community nurse bring over the equipment ready to go home with and she is lovely!! So we have Dan’s parents coming today to drop off more supplied, take supplies home and have cuddles!!

So from us all here at the hospital we hope you have had a good week so far and it continues to amazing!!

Lots of Love Dan, Casey and Leya

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End of a Long Week and the Start of a Big Week

Wow this has been a long week… We have had visitors, been on our own as daddy was at work, learnt new ways to care for our daughter and have finally been moved to the ward!!
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We have loved all the visitors that have come to see me and Leya!! It has kept us occupied and we LOVED seeing people from the real world 😃. It was lovely so see family and even those who had yet to meet Leya. She gave cuddles, smiles and showed everyone that she is made of some strong stuff indeed.

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We had a lovely visit from both of Leya’s God Mummies to be (hopefully is all goes well and we get out in time) and I had an awesome time with Hayley and she made me giggle and smile and really cheered me up.

Both me and Dan have now been signed off for suctioning which is one step in the right direction and we both tagged team in tie changes this morning which was fiddly and not the easiest thing in the world but between the two of us we managed it!!

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Leya has come amazingly far this week!! She is now off her humidification during the day and wearing either a Swedish nose or her bid. She had her feeding tube removed and is now feeding much better but due to a little weight loss is on SMA High Energy milk, but the amount she is taking is more and more each day so we cant complain to much oh wait we can when she brings it all back up again!! And we have just been moved into our own cubicle on the ward which means most of her care is down to us again!!! This scares the hell out of me and her dad as we have had nurses on call 24/7 for the last week and a bit!! We feel like she has just been born again and we are brand new parents!!

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We both missed Dan/Daddy all week the phones calls throughout the day to update him just weren’t the same but the minute he got back we both felt at ease again!! Leya was full of smiles for her daddy which made us both feel happy that she missed him and was glad that he was back with us!! He is now defiantly not allowed to leave again we are locking him in with us!!

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She is as smiley as even and making the nurses run around after her which is funny and the nurses on the new ward have already fallen in love with her after 10 minutes.

She is still on her antibiotics as she has an infection somewhere but they are not sure where but its banana flavoured so she scoffs that right down without any problems.

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Then we have this massive week ahead of us!! Our first Trachy change is dawning 😁 the nurses will do it first to show us how it is done then me and Dan will have to crack on and have a go!! To say we are cacking our pants is an understatement I mean we have to change a tube that is inserted in our childs very small neck that is her only way of breathing (ahhhhhhh) This is when we feel that maybe taking one of the lovely nurses that we have grown attached to home 😃.

We are hoping that once we have our discharge meeting this week and when everything is signed off and in place we will be coming home!! It is looking like this will happen at the end of this week or the beginning of next this is also another scary thought, but the support from home has and will be amazing!!

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We would like to say a massive thank you to all that have donated, helped with Leya’s Journey and are doing fundraising in the future, your support and generosity has been overwhelming.

So from all of us here at the hospital we are progressing (a little faster than mummy and daddy are ready for) and focusing on coming home!!

Much Love

Dan, Casey and Leya

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From the Beginning

Where to start… Last July myself and my newly married husband Dan found out we were pregnant with our first baby!! We were over the moon and couldn’t wait to tell everyone the happy news. We waited till our twelve week scan to make sure all was ok after having a miscarriage the October before but that day came and our emotions were all over the place but wow how could you fall in love so quickly with a black and white fuzz ball??!!
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So my pregnancy was ok apart from the wrongly named morning sickness which I was suffering everyday all day till the day I gave birth!! So now we really started to get excited buying clothes and furniture for her nursery and her pram!! Then our 20 week scan and we were so excited to find out what our little Jellybean was but ohh no those legs were tightly shut!!
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So we had another scan booked in and hoped our jellybean would let us know what sex we were to expect. This was when daddy took to talking to our bump and asking nicely to open our legs to give us a quick peek and SHE did on our 28 week scan!! Our little girl was well behaved and showed off everything (much to daddy’s disgust). Once out of the scan he informed her that she was to shut those legs tight again and not open them for a long time.

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So fast forward to the 26th March 2014 I went for a routine midwife check and this resulted in a quick dash to Exeter where I was diagnosed with pre-eclampsia. Now this is where the trouble begins!! So we were both monitored closely and I was told I would be induced and wouldn’t be leaving with our little Princess Leya. Now a mixed bag of emotions followed “OMG were not ready” “yay she will be here soon” ect…

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So Sunday 30th March was the big day!! The pessary was put in place, the contractions came and then I was checked Monday morning but nope nothing had changed. This is when a doctor with MASSIVE hands came and broke my waters then we were all go!! Im not saying it was easy but it also wasn’t that bad. Both my mum and Dan found me on diamorphine rather hilarious (thats another story) and at 11.13pm on the 31st March our little Leya Kathleen Ellena Raper was born weighing a good 5.13lbs!!

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So we stayed in hospital for 2 days then were sent home. Oh that was scary I wasn’t ready to be on my own without the call button!! But once home we all settled in to family life. We noticed that Leya would have these episodes while feeding and crying of stopping breathing and going blue but when mentioned to 3 different health professions told it was normal and she would grow out of it!! So we carried on with these episodes and just dealt with it.

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So everything was trotting along nicely then on the 3rd May I was rushed into hospital with suspected gallstones (now that is pain). I was scanned, drugged and in for a while and this was hard. My baby was only 5 weeks old and I was forced to be away from her.

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So i was discharged to be review in a couple of weeks time but my little gallstones had other ideas and I found myself back in hospital 2 weeks later but this time was much worse. I would rather give birth 10 whole times than deal with this!! Then my lovely doctor muttered SURGERY so on the 23rd May I went down had my surgery came out and was handed this…

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2 maybe 3 they told me but I was pain free and going home. We stayed with my parents while I recovered and good job we did as on the 1st June Leya was blue lighted to Barnstaple after a massive episode of not breathing and going blue. We got to the hospital and she was X-rayed and found to have a chest infection but they also thought she has a floopy larynx which was the reason they thought she was stopping to breathe. She was kept in with a review in 8 weeks time.

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So home we were doing well the antibiotics had done their job and things were looking up!! Until the night that changed ours and our little princess’s life!! It started as a normal day but Leya had been rather sleepy and off her feeds which is really unlike her. At 5pm she had another episode but this was the worse she had ever been so we called the ambulance as normal. The first responder arrived and she had a further 6 episodes in front of him. Then came the dread and most heart-wrenching words air ambulance, this is when we knew it was serious.

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We arrived at Derriford and she was seen by the ENT team where they put a camera down her nose (I didn’t see this as couldn’t bare my little girl having to go through that) but daddy was there the whole time. They kinda said yes its a floppy Larynx so we got used to that idea and that she would grow out of it. Then the ENT specialist came round Monday and this was the day we got her diagnoses she unfortunately had the not very well known and not so common Bilateral Vocal Cord Paralysis. This shattered our world. So many questions… What did this mean??….Would she talk??….Would she get better??..

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So the hardest decision came on the 17th of June when Doctor Rainsbury came to see us and voiced how he felt that a Trackeostomy was our only option to keep Leya’s airway open and to give her the best chance to recover. This was the biggest blow in the world but we didnt really have any other options. So on the 18th June she went down for her operation. This was the longest time for me, Dan and Leya’s Nana who was here to support us. After 2 hours the Doctor called us round to see her. The diagnosis was confirmed.
Leya was crying but there was no sound coming from her and this was the most sinking feeling in the world and I found myself in floods of tears. My baby daughter who was still only 11 weeks old has had this major operation and she was so upset but yet couldn’t let us know. I would have given anything in that moment to swap places with her.

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The next few days were hard for myself and Dan, getting used to the new sounds or lack of, suctioning Leya so she could breathe and just coming to terms with what has happened. But it was all made better with the fact this strong, inspirational tiny baby was still smiling and giggling away.

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So the last few days have been hard as Leya hasn’t been keeping her food down so is being fed through her NG tube as she has lost weight but is still loving her baths and all the attention she is getting from the nurses.

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Me and Dan have been learning how to suction Leya ready to go home and care for her which is a massive learning curve but we will manage. With this condition we are facing a lot of unknowns as we don’t know if Leya’s vocal cords will get stronger or if they do when this will be. So as of today we are happyish, sleeping on mummy having cuddles and looking forward to updating you all next week!!

Sorry its been a long post but now you know our story it will just be updates as and when they happen!!

Leya’s Facebook page please like and share!!

https://m.facebook.com/story.php?story_fbid=10204194742775523&id=1435478768

Lots of love

Dan, Casey and Leya xxx

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