A Mother's Instinct

I came across a lovely quote on the internet yesterday:

"When a baby is born, it's a mother's instinct to protect the baby. When a baby dies, it's the mother's instinct to protect their memory."

- Unknown

This really sums up what I am trying to do with Erin's Gift. Of course it is amazing that we are able to raise the money we are raising for some great charities and awareness of Turner Syndrome, but what makes it even more special for me is that we are doing it in Erin's name. We are saying thank you to the organisations that helped us by helping them to support other families too, all in memory of our beautiful and precious little girl. I had not thought of it before, but this truly is my instinct. I find it  hard to contemplate going back to life before Erin because I feel so different now. I am a mummy, even though my baby girl is no longer with me. I spend hours each day tweeting about little Erin and sending emails regarding our fundraising because it is my instinct to do this. I need to spend time thinking about Erin, writing about Erin, telling people about Erin because the thought of her being forgotten or of her life not meaning anything terrifies me.

One thing I really hate now is being bored. I cannot stand having nothing to do because it just reminds me of how busy I should be. I am able to lie in, but this makes me sad because I know I should have been woken by little Erin crying for a feed. I am able to watch my favourite TV programmes without distraction, but this makes me think about the fact that we have no need for baby monitors on the side of the chair, listening out for Erin's cry. Everyday ordinary things now stand out because they highlight this huge emptiness I now have in my life. I do the weekly shop and I feel sad that I am not parking in the mother and baby spaces; that I am not struggling to push a pram and carry a basket; that I am not rushing around doing it as fast as I can because I need to get home for Erin's nap.

In some ways it seems strange that I can miss things I have never even done, but I do miss them; I miss them terribly. I had imagined them so vividly and with such eager anticipation when I was pregnant - I couldn't wait. Now when I hear mothers having a moan about their lack of sleep, or the fact that they are unable to go out somewhere because they cannot get a babysitter I find it really difficult. I know it is understandable for them to moan and that most parents do on occasions and I don't blame them for this, but I know that their situation is so much better than mine. I know that I would give anything to be sleep deprived and missing out on the social event of the year if it meant that I had little Erin in my arms.

This fundraising really is my instinct - it is keeping Erin's memory alive. Maybe this explains why I am able to do things that I never would have imagined myself doing before - writing this blog; tweeting celebrities; asking people I have never met before for donations to our auction. I feel like I can do anything when it is for little Erin - and that anything is possible!

British Summer Time....

Well the clocks have changed to British Summer time, the sun is shining and it is a beautiful day. A beautiful day that makes me feel very sad. Sad because I want to be out enjoying the sunshine with my lovely little girl, but instead I am inside the house working on our fundraising plans. I do get little bits of joy and excitement from the fundraising - when a celebrity says they will donate an item to our auction or a new donation is made on our fundraising page it feels good for a second. But, then I remember why we are doing it and the fact that we are raising this money in memory of little Erin. I so wish we were raising it in celebration of her recovery from her heart operation and in celebration of her life.

Over the last week I have started making plans for our auction which will take place on October 20th. I don't really know what I am doing, having never done anything like this before - but hopefully it will come together okay. Yet again I have been overwhelmed by the support of people on twitter to help me with this. I have had numerous offers of items for the auction, which is wonderful. We are going to set up a website soon for Erin's Gift on which we can list all the items that will be included and the wonderful companies and individuals who donated them. I would also like to see if we can find a band/singer who would be willing to play and an auctioneer. The auction will be raising money for the Alder Hey Imagine Appeal. Alder Hey is the biggest children's hospital in Europe and they treat over 250,000 children a year. It really is a wonderful charity to support. I will keep the blog updated with the items for auction and how to get bid/get tickets for the event.

Meanwhile, my husband is well on the way with his training for the Manchester - Blackpool bike ride on 8th July, raising money for the Turner Syndrome Support Society. You can view the justgiving site for this here http://www.justgiving.com/ErinsGift. Alternatively you can sponsor the cyclists and support women with Turner Syndrome by texting ERIN61 followed by £(amount) to 70070.

Finally, our fundraising for Ronald McDonald House is ongoing and the justgiving page has reached  £6050 http://www.justgiving.com/Erin-Clancy. This is wonderful - it costs them £25 a night to support one family. The money we have raised in memory of Erin so far will pay to support a family for 242 nights, which is really great and will really make a difference. I have tried before, but it is so difficult to express quite how much this support means to a family when their child is seriously ill in hospital - it is invaluable! You can donate to support Ronald McDonald House by texting ERIN60 followed by £(amount) to 70070.

Once again I thank you all very much for your continued support of Erin's Gift - it means a lot to me.

"I'll love you forever,

I'll like you for always.

As long as I'm living,

My baby you'll be"

- Robert Munsch

Cycling for Turner Syndrome

I felt a little lift yesterday as plans got underway for the sponsored bike ride in memory of Erin. On July 8th some lovely cyclists are going to take part in the Manchester to Blackpool bike ride and collect sponsorship that will go to the Turner Syndrome Support Society. I have written previously about how valuable this charity is. They provide support and friendship to women with Turner Syndrome and their families. They also liaise with medical services and raise awareness of the condition. This is much needed. It is hard to believe that I had never heard of Turner Syndrome 12 months ago, but now it has taken my baby girl from me and changed my life completely.

The presentation of Turner Syndrome can vary between women. For Erin, we had been told that it would result in her being short in stature and she would need to have regular growth hormone injections throughout her life. She would also have been infertile and may have experienced some difficulties with learning. We had also been warned that she may have a congenital heart defect - although it was not thought this would be too serious. Tragically this heart defect took Erin's life. We had never expected this and are now left trying desperately to keep her memory alive and say thank you to the amazing organisations that helped us.

So far 11 cyclists have signed up for the bike ride and about another 10 have shown some interest, which is fantastic. I have created a justgiving page here http://www.justgiving.com/ErinsGift I have chosen a target amount of £1500 - it would be amazing if we could reach that. My husband has already been out on some training rides. I don't think I will take part in the ride - I like to see myself as 'team manager'. Hopefully I will be able to promote the fundraising page on twitter and get some sponsorship for the cyclists. I also need to have a think about transport on the day and maybe getting some Erin's Gift t-shirts - that would look great.

Once again I am moved by the generosity and support of friends and family. I really do appreciate the time and effort they are taking to help us raise money in memory of Erin. It means a lot to us.

Fundraising Update

Today I thought it would be good to update you on the fundraising progress and plans we have in place so far and a reminder of the reasons why we are fundraising.

Ronald McDonald House
I am continuing my twitter campaign to raise awareness and hopefully funds for the wonderful work that Ronald McDonald House do. Yesterday we reached £5400 on the justgiving page which is just amazing and totally beyond what I ever could have imagined we would achieve http://www.justgiving.com/Erin-Clancy. This amount will help them provide accommodation and support to the family of a seriously ill child for 216 nights. This is 216 nights where a family somewhere who are going through one of the worst times of their lives will have one less thing to worry about - allowing them to focus more of their energy and strength on supporting their child to hopefully recover. I honestly can't understand why Ronald McDonald House are not better known - I have lost count of the number of parents who have contacted me on twitter to say they don't know how they would have coped without their support. Hopefully, through twitter, we as Erin's Gift have enabled a few more people to learn about their wonderful work.

The Turner Syndrome Support Society (TSSS)
We are in the initial stages of putting together an Erin's Gift team to complete the Manchester - Blackpool bike ride in July. So far we have about 12 confirmed riders and a few more possibles, which is amazing. All will be collecting sponsorship for the TSSS so hopefully we will be able to raise a lot of money for this very valuable cause. One of the scariest things upon learning of Erin's diagnosis of Turner Syndrome was realising that it seemed very unheard of. I found great comfort in knowing there was an organisation like the TSSS who would be able to provide support and friendship to both Erin and ourselves as her parents.

The Alder Hey Imagine Appeal
I have previously written in length about the brilliant care given to Erin by all the staff we encountered at Alder Hey Children's Hospital. At Erin's funeral donations made by family and friends were split between Ronald McDonald House and the Intensive Care Unit at Alder Hey. Now we are hoping to raise more money for them throughout 2012. Our first event is yet to be fully organised, but it is likely to take place in April and involves a generous local hairdresser who has agreed to do some haircuts in return for donations. Our second event is going to take place in October and is going to be a charity auction; this will be our biggest fundraiser of 2012. I am currently in the process of formulating a list of local and national businesses to write to for items, as well as celebrities and football teams. Already on the first day of planning a generous tweeter donated two amazing items to us. So far this event feels very daunting and scary to organise, but I am hoping that we have given ourselves enough time to make it a real success.

There are a number of other charities I am becoming aware of through twitter that I hope we will be able to fundraise for in the future as well. As always, I am inspired to do this by my beautiful daughter, Erin. The bravery and strength she showed throughout her life amazed me and I couldn't be prouder of her. The effort and time I put into fundraising in memory of Erin is my gift to her and the money and awareness we manage to raise is Erin's gift to those who need it.

Turner Syndrome.......what's that?

We have started organising an Erin's Gift team to complete the Manchester to Blackpool bike ride in July. We are going to use this event to raise money for a very special charity - the Turner Syndrome Support Society (TSSS), so I thought now would be a good time to talk a bit more about Turner Syndrome.

I have to be very clear from the start and say that I do not know a huge amount about Turner Syndrome. As mentioned previously, we found out that Erin had this at 20 weeks of pregnancy following amniocentesis. We had never heard of it before and unfortunately our local hospital did not feel confident in explaining it to us. Therefore, upon learning of the diagnosis in a phone call on a Tuesday afternoon, we had to wait until the Friday before we could meet someone to talk through the implications for our precious baby girl. This was an awful wait - when all you have is the name of a chromosomal disorder that you know your unborn child has, the internet is not a friendly place. We read horror story after horror story and became uncertain as to whether our gorgeous girl would even survive pregnancy, never mind be able to live a good life once she was born. Among the scary stories, however, we found one website that offered some hope - the website for the TSSS http://www.tss.org.uk/  In particular, after looking through the gallery at pictures of gorgeous smiling girls we realised that maybe Turner Syndrome wasn't something to be too scared of and felt some reassurance.

In  brief - Turner Syndrome is a chromosomal disorder affecting only females, causing deletion of the X syndrome. Therefore, whilst the majority of women have two X chromosomes, women with Turner Syndrome only have one. In mosaic Turner Syndrome meanwhile, the second X chromosome is only partially deleted. The features of Turner Syndrome vary between women. In our meeting with the geneticist it was explained that Erin had a rare form of mosaic Turner Syndrome.

The geneticist reassured us that, although the miscarriage rate for babies with Turner Syndrome is extremely high (approximately 98%) we were now past the risky period and there was no reason why our baby should not survive pregnancy. She also told us more about the possible implications of the diagnosis for Erin, explaining that nothing was certain and a lot would have to be wait and see for when she was born. Overall she was very postive, however, there were 2 aspects of it that caused me particular worry. The first of these was the possibility of Erin having a congenital heart defect. We were reassured that she would have a scan to check this shortly after birth, but that she may require heart surgery.  However, antenatal scans did not detect any problems with Erin's heart and the cardiologist explained that even if there were, the surgery to fix it was relatively routine. At no point did we consider the fact that a heart defect may result in us losing our little girl.

The second thing to worry me was the fact that, due to the nature of Erin's particular form of Turner Syndrome, she would be infertile. This made me incredibly sad for my precious little girl and was the aspect of Turner Syndrome that I found most difficult to deal with. Throughout my life I have always wanted to be a mummy - the thought of being pregnant had always fascinated me and the experience of it had not diminished this. Despite this pregnancy being a stressful one I still loved it. I adored every day of carrying my baby; feeling her kick; watching my ballooning tummy and even the pain when she stuck her foot in my ribs. Realising that my darling daughter would never get to experience this filled me with great sadness. I felt glad that there was an organisation like the TSSS who would be there to support both Erin and I when the time would come to discuss this with her.

I think it surprises people to learn that Turner Syndrome affects 1:2000 females - I think this is a lot considering the lack of awareness there is. The work that the TSSS do is so important and so valuable to the women who have Turner Syndrome and their families. It had often eased some of my worries for Erin when I thought about the fact that she would have this community to support her and I was sure that through it she was going to make some great friends.

I have not gone in to great detail regarding Turner Syndrome in this post- mainly because I do not have the knowledge to do so. I would encourage everyone who would like to know more to visit http://www.tss.org.uk/index.php/what-is-ts. I hope we are able to raise lots of money to support this wonderful organisation as my brief experience with Turner Syndrome has taught me that much more awareness of it is required. Despite, the fact that the care and support we received from our local hospital during pregancy was brilliant it did always concern me that they did not know a huge amount about Turner Syndrome. I do not believe that any couple should have to wait 3 days from  hearing a diagnosis to finding out what this would mean for their child. Furthermore, I can count on one hand the number of people that we told about Erin's diagnosis who had heard of it before. I was preparing myself for finding out as much as I could about Turner Syndrome in order that I would be able to support my daughter in the best way possible and were it not for the TSSS I think this would have been a much more difficult task.

Introducing Erin

Hello. I have decided to start a blog detailing my journey as I aim to raise money and awareness for charities that are close to my heart. I have to be honest and say that most of these charities were unknown to me 3 months ago, before my beautiful daughter Erin was born. Tragically, Erin passed away on 1st December 2011, aged 22 days, and it is in her memory that I now aim to raise as much money as I can. I am joined in this aim by Erin's daddy.

I will begin my blog by telling you a little about Erin. We found out that our baby may have difficulties at the 12 week scan in pregnancy when she was seen to have an increased nuchal fold. We were told that this was indicative of Down's Syndrome and decided that, although we would not terminate the pregnancy, we would have amniocentesis to find out for certain. This was a terrifying experience, but ultimately led to a diagnosis of a chromosomal disorder called Turner Syndrome. We were advised that the implications of such a diagnosis were wide-ranging, but that there was a possibility our daughter would have heart problems. Due to this, it was arranged for Erin to have a heart scan within 48 hours of birth. We were told not to worry too much, however, as if there was a problem it could be fixed with surgery. Additionally, antenatal scans had shown no problems with her heart.

Erin was born at 38 +1 weeks on 9th November 2011 at 8:45am and she was totally gorgeous. There had been some concerns with her heart rate during birth and she required resuscitation after she was born, but the paediatrician checked her over and thought she looked perfectly healthy. Her daddy and I were overjoyed with our beautiful daughter who had overcome such adversity to be born (estimates suggest that 98/99% of pregnancies with Turner Syndrome miscarry). We knew straight away that she was a little figher and couldn't wait to take her home.

That afternoon, Erin had a heart scan, which the doctors thought looked fine. They sent a copy to Alder Hey Childrens Hospital for a second opinion to make sure. The next day, doctors at Alder Hey telephoned to say they wanted to scan Erin themselves. Doctors would not discharge me, so Erin went to Alder Hey with her daddy and I was told she would return in 3 -4 hours .... she didn't! The doctors at Alder Hey detected turbulence on the scans and they wanted to monitor her further. I immediately set about trying to get discharged myself and was finally reunited with my precious daughter at 9pm that night. Being 60 miles away from my new born daughter for those 9 hours was horrendous and I was so relieved when I got to Alder Hey to find out that a charity called Ronald McDonald House could provide us with free accommodation only 3 minutes from Erin's ward. We were to stay there for the next 3 weeks until Erin tragically passed away.