Guestbook

The very best of wishes to the four of you for this Thursday,

lots of love
Mags

Hi im so sorry for your loss. Niamh was a beautiful girl and an angel now. My daughter was diagnosed with MPEI in 1997 and things have not been easy. She will be 15 next month. Sharon

Hello, I have been researching for months now because my cousins baby has been diagnosed with Malignant Migrating Epilepsy. We are desparate as I am sure you felt. Cece is 4mo old and has been at Vanderbuilt University for 9 weeks now. All her tests come back normal except for her EEG'S. She has a g-tube now for feedings and Dr's have tried the Ketogentics diet but she didn't produce ketones so they put her back on regular formula. She cries for hours at a time and then will have 3 or 4 good days. Dr's here are just "stumped" need your prayers and any info you could give us will be greatly appreciated! Thanks for sharing this site. Its has been very helpful!

Remembering beautiful Niamh and thanks for sponsoring Tara xx

Hello you lovely parents......Niamh was a blessed little girl to have you and wonderful grandmothers and extended family too. I had a brilliant 3 hours with Granny Mena today ......after 30 plus years!!! We had a lot of reminessing to do about our school days but it was constantly punctuated with loving talk of Naimh and her Grandad. What a big ask it was for you to manage such losses. There is something very special though in the way Niamh is so gently resting in her Grandad's care. Can you tell I am crying?It is the best it could be and I hope some comfort to you all.
Mena oozes love and warmth and i can see how she will have inspired and supported you throughout Niamh's short life.
I pray your pregnancy is comfortable and baby arrives fit and healthy "before you know it "
With alot of love and ADMIRATION to you both and everyone who contributed to Naimhs wellbeing and comfort.
Fanchea

Thinking of you all today; hard to believe two years have passed...Niamh has a special place in my heart. Thinking of you all today xxxx

Thinking of you all today.xxxxx
Laura xx

I am an old friend of Tara, Corbin's Mom and she told me about Corbin's journey and directed me to this site... Looking through I realized I also know Niall from many years ago... As a mother of a 2 year old boy the story of Niamh, Corbin and the other brave, strong children I have read about have touched me profoundly. I hugged and kissed my son so much yesterday, I cannot imagine how hard this must be...

My thoughts and prayers along with love and positivity are with the innocent children struggling for the basic things we take for granted every day.

I hope Niamh, in heaven knows how many hearts she has touched, even someone, like me, in New York that never met her.

Thank you for sharing your story, I am a better person and mother for having more understanding on this issue.

Love,
Tina and Leo

I am an old friend of Tara, Corbin's Mom and she told me about Corbin's journey and directed me to this site... Looking through I realized I also know Niall from many years ago... As a mother of a 2 year old boy the story of Niamh, Corbin and the other brave, strong children I have read about have touched me profoundly. I hugged and kissed my son so much yesterday, I cannot imagine how hard this must be...

My thoughts and prayers along with love and positivity are with the innocent children struggling for the basic things we take for granted every day.

I hope Niamh, in heaven knows how many hearts she has touched, even someone, like me, in New York that never met her.

Thank you for sharing your story, I am a better person and mother for having more understanding on this issue.

Love,
Tina and Leo

So sorry that these thoughts and prayers have come so long after Niamh's passing but nonethless they are heartfelt and sincere. NIamh's story is truly moving and I am so humbled by the strength and dignity shown by you all. You are, as Niamh obviously was, truly remarkable.

What a beautiful tribute to your little girl, so moving. My husband and I, and our daughter Poppy, will be joining Jo Cullen for her charity buggy fit class in February to raise money for Brooklands. We shall be thinking of Niamh and all the joy she clearly brought to your lives! Love Pippin

Hello Alison, Niall and Connor

I hope you had a lovely Christmas and I wish you all a very Happy New Year.

I will look up at the stars tonight and remember darling Niamh, who I do think of often.

Best wishes

Mary (Corbin's Nanny)

Niamh's story is so touching. Your website is beautiful! Niamh is such a beautiful baby. My thoughts and prayers are with you and your family

Jane Stefanik
The Hemispherectomy Foundation

Very sad story.
Such a beautiful girl.
Rest in peace x

Hi, just wanted to say how touching Niamh's story is. I have alittle girl who suffered from multiple seizures every day for 2 and a half years since she was 4 mths old. She was also on the ketogenic diet but came off it last october, unfortunately it didn't work for Caoimhe but by miracle her seizures stopped in January. However they left her with severe developmental delay in all areas but she is very happy and always smiling. Has no words yet and is learning to sit unaided. Well done on this website, its fantastic. Im sure your little girl is very proud x x

Just wanted to sign in and say you are in my thoughts tonight Poppet.

Love Julie xx

Happy birthday Niamh, thinking of you always.xxxxx

Happy birthday Niamh! Hope you are having fun with the angels today xx

Hi Alison,

Just popping by Niamh's web site today to read up on treatment for a specific symptom. It reminds me again how beneficial all your info is. Many thanks again Alison.

Hugs from across the ocean
Rebecca & Mary

your website is such a lovely tribute to s beautiful little, brave girl x Wendy gorman

Alison,
This is a wonderful site! My baby daughter is diagnosed with MPEI octobre 2009. I've found valuable information that I couldn't find somewhere else. Thank you!
Christine from Belgium

Niamh was a beautiful little girl...looks like you DID indeed make the most of her life, and gave her the best life she could've asked for. We lost our baby, Gavin Patrick, on November 26th, 2009. He had both Lissencephaly and Dandy Walker Syndrome and at the end suffered from what appeared to be seizures, but was actually just spasms. Thanks for sharing Niamh's story, and your strength.

Thinking of you all today. xxx
Wth love
All the girls at brooklands.

Alison, we're thinking of you all today. Can't believe it's a year already since Niamh's passing..

Your website is an amazing source of information and a wonderful tribute to Niamh. I am sure many families will be grateful to you for sharing your knowledge and experience. How you have found the time, energy and strength to bring together all this information in such a short time is beyond me.

All our love

Beatrice + Frances xx

Thinking of you all, especially today.
Love Penny

9 Feb 2010 - It has been a year since we lost Niamh, but it seems like yesterday that I last saw her smile. My thoughts and support are with you, her family, not just for today but everyday. I am so proud of everything you have achieved to keep fighting against the disease that took Niamh away from us and to help others in similar situations. Keep up the great work!

Imi and Family (Niamh's ever proud Godmother)
xxx

Your website is a beautiful tribute and I think that it is wonderful that you are sharing your experience and information with others. I am friends with Rachel and Micah Brittin in Homer. Our son Brady was so very similar to Micah, but we did not push for a diagnosis. We simply wanted to treasure and enjoy each day we had with him. Unfortunately we lost Brady Dec 4.
Thank you again, for sharing something so very intimate.
Maria Allesch

Good Morning, Alison and Family,
I was thinking of you and your precious Niamh this morning....so began hunting for where I'd tucked your link. Imagine the Holidays were tougher than tough, Bless you.
Mostly, just wanted you to know someone is thinking of you as you travel thru each day.
Much Love & Warm Support,
Heart-Hugs & Prayer-Songs, too.

Dearest Alison
What a wonderful tribute to your beautiful daughter. I will always remember how Niamh joined special class at the same time as Poppy. She was a truly special little girl and you are an inspiration.
Lots of love to you all
Debbie x

Dear Alison,
This is a beautiful site and I'm sure I'm not the only person reduced to tears by Niamh's story and the extremely moving video. The time and effort you've spent in compiling such a comprehensive resource must be deeply appreciated by other parents struggling to find information on such a rare condition.
Warm Regards,
Lisa (Tracey's sister)

Ali
What wonderful parents you are. Niamh's story is a truly heart wrenching one, but your dedication and overwhelming love and sheer determination have been an inspiration. I hope the creation of this honest, open and informative site helps you on your continued journey. You have always been strong and from reading this, I should think Niamh had a lot of your character in her. She would be so proud of her mummy as we all are. Fondest love, Tracey x

You should be so very very proud of yourselves...your courage is admirable and this website a testimony to loving parents of a special little girl.

What a wonderful website, beautiful pictures. she was an amazing little girl.
love Ruth (CHASE)

Hi Alison
WOW .. website is looking great, very impressive! I'm loving the fingerprint heart, I'm ordering one tomorrow.
Niamh would be so proud of her Mummy doing all this in her memory, you are one special lady Mrs Maguire!
Take care and keep up the good work. Lots of Love, Anna & Nathan x

Dear Alison,
Thank you for making all your work available to the families and caregivers of the other children dealing with MPEI. Reading through your site has made all the difference in our quest to give Micah the best care possible. I can't tell you how much I appreciate it!
Lily

Wow,what a wonderful,imformative & very emotional site.The video tribute is absolutely beautiful & shows how you have been blessed with a gorgeous spirited little girl & she too had been blessed to have you as her loving parents.
We would be honoured to have Luke & Freyja as Niama"s friends.
Lots of love & affection Lee,Luke & Freyja xxxx

Niamh was a beautiful baby and child, my family had kristian with simular problems who was with us a year, now in his 30s. There is no doubt of the suffering for all, but you gave her a lot of happy times in her short stay with you, it shows on so many of the pics. Love the pic of the baby holding her in a protective way, his big sis. She will never be forgot, but hope your healing a little, the memorial and raising awareness and funds for research will help.
found you through jimmy anderson.

Dear Alison,

Niamh would be so so proud of this lovely website you have done, its amazing!!!! Hope you are all doing the best that you can honey, the next part of our journey is such a hard road to travel without our babies. But because of who they made us we will all get there!!!!

Sending you all lots of love

Caz and ^^ Angel Dec ^^ xxxxx

Ali,
This website is very easy to read and understand. Your hard work will really help parents resarching MPEI or the ketogenic diet.
And the site reminds everyone who knew Niamh just how complex her journey was and shows how many difficult and brave decisions you and Niall had to consider, investigate and make.
She was a very lucky girl to have you, as you never gave up in your search for either solutions or ways to minimise whatever new challenge came along.
lots of love,
Margaret

Alison,

Well done Alison. xx

The love and care you have shown for Niamh is like no other. The way you have reached out to others has touched me. I know you have tried to do so much to help others who have or are experiencing similar illnesses to Niamh's but you have also touched many other people's lifes to.

Niamh is still very much in my thoughts and our hugs are winging their way to you as I type this. xxx

Take care. Lots of love

J x

This is such a beautiful site Alison. I'd love you to add Maddie as one of Nimah's friends - let me know if that would be ok, & what info you need.

Hope you're all well,

Lots of love,

Nikkie, Maddie, Tyler & Carter xxx

Dear Alison. i've now had a chance to spend time reading through your wonderful website dedicated to Niamh and can only say as a fellow GOSH parent that it would have been incredibly helpful to have had something similar available when isobel was diagnosed with epilepsy - thank you - sara

Sending love & thanks Alison for your continued dedication & support,
Carolyn (Jocelyn DeIulio's nan)

What a wonderful informative website Alison- Thankyou for sharing your beautiful angel's story with us & for continuing to support other families like us xo
Lots of luv Tanya & Jocelyn xo

Ali, You truly are an amazing person. This website is emotional yet informative and a true dedication to beautiful Niamh. Niamh truly lives on in everything you do!

Love Elena
x

Hi Alison. An amazing site you've created for Niamh. A really beautiful tribute. Your knowledge is incredible, and the love and dedication you have for Niamh shines through, as does your determination to help others in similar situations too.

Kemal

This is one amazing website Alison. Kelly xxx

Hi Alison & family,

Beautifully done Alison. An excellent place for parents and family to visit.

Niamh and her angel friends are truly smiling down at you.

Hugs,
Rebecca, Mary & family

Dear Alison and Niall,
I learnt a lot reading Niamh's website today, and I am sure that it will be an invaluable source of knowledge to parents of children suffering from similar conditions. A beautiful tribute to a beautiful little girl. Eve x

Hi Alison

Thank you so much for asking if you could put Emily on the Little Angels page, It is a wonderful website I know how hard it must of been to put it together, It is a lovely way to remember are little angels. xxx

Alison,
This is a wonderful site, not only for the rememberance of your special little girl and also for the sharing of valuable information for other parents of children with MPEI.
I hadn't seen Niamh for a long time before her passing but thought of, and still think of, both you and her on a daily basis. You are both such an inspiration and I am sure she would be so proud of her clever mummy for extracting such positives from such a sad experience (the illness, not the knowing of your child).
Well done you for constructing such a great site, I never tire of seeing photos of the beautiful Niamh - she really was so special.
Gem
xx

Hi Ali,

Everytime I see or hear something new that you have done for Niamh and her condition both during and after her short life, it never ceases to amaze me.

I honestly don't know where you get the strength and energy from, but so many people have already benefited from your hard work and dedication and I know this site will enable more people to find comfort and support. It is inspiring to us all.

Di xx

Just seen the wonderful website you have made of Niamh's life. It's a beautiful tribute from such devoted and loving parents. She was a really lucky little girl to have you both for a Mum and Dad. ' Niamh's Story' shows the heartache the whole family felt but more than that, the pictures capture the way you all made sure every precious moment of her life counted.
Whether you want to be or not , I imagine you are a major inspiration to other families who find themselves in the same situation.
Our love to you both and hugs for Conor.
Uncle Bill & Aunty June x x

Alison,

You are such a clever lady. Niamh is an inspiration to us all. What a beautiful, brave little girl. Not a day goes past when i dont think of her.

Love Claire xx

Thank you so much for sharing Niamh's story. You have done an amazing job. She truly is an angel. I know this site will help others and that is so thoughtful and brave of you. Hugs and prayers continue for you all from Chicago. xoxox The Condit Family

This website is a beautiful dedication to Niamh and something you should be really proud of. I'm certain it will be invaluable to parents in similar circumstances, well done you.
What continues to astound me is how brave Niamh was, how much you all went through and how hard you fought to give Niamh the best life possible. Her story is so sad and so unfair but if your experiences can help others then there is a silver lining. Thinking about you lots, love Honor xx

What a fantastic, emotional, informative website. You really are amazing. These 6 months have flown by and I am sure it gets no easier but you are an inspiration! You have managed to make something postive out of something so terrible. This site allows you to share all of the information which you fought to get over 4 years and already you can see from the comments how you are helping parents all over the world. Niamh will be very proud of her clever mummy. Love Rachel x

Alison,
I have just watched the video you have made in Niamh's memory, it is such a beautiful tribute and really captures the esscence of Niamh's short but very full life. It had me in tears.
This site a a brilliant idea, I hope it helps many parents, as i'm sure it will.
Love EmmaG xx

Hi I have just visited your website and just wanted to say how lovely it was, Niamh was absolutely beautiful. We to had a little boy with MPEI called Oskar and he passed away on 10th February 2007 aged 18 months. We even had the reindeer outfit as well!! Love to you all x

Hi Ali

Just visited the site and it looks wonderful - you have done Niamh proud! The site has a fabulous mix of memories and fact which I have no doubt will provide great help to others unfortunately facing a similar battle.

The 6 months seem to have gone so quickly, but Niamh's light shines brightly as she remains an inspiration to all that had the pleasure of knowing and loving her....

Love Godmum Imi
xxx

What a fatastic site that will help so many others. Congratulations to you Ali, it can't have been easy remembering all the tough times, but you have done her proud. Thinking of you always, Tasha x

HI Alison,

I just visited the website and love it, I think it's brilliant!

I'm amazed at the energy and time you would have had to put into it, what an achievement. You've done a great job.

Emma xx

Alison,
This is a fantastic site. You have put so much work into it. The information you have provided will be of great benefit and help to others. Having this resource will hopefully lessen the challenges parents of children with MPEI have to face when their child is ill, as so much information is available in one site and will provide the answers to so many of the questions they will undoubtably have.
Best wishes to you, Niall and Conor
Denise Leonard

Hi Alison
What an amazing person you are what are great site haven't got into all the different sections yet to busy crying.
Can't wait to add some words to Corbins Photo
love Taraxx.

Alison,
Thank you for making this web page. I love it. It describes our children so well and it was good for me to see all of the results you compiled. I cried again, for the millionth time and It is so wonderful to now have a place for parents to go! Much love to you from halfway across the globe!

Hi Alison,
The site is a beautiful tribute to a beautiful little girl. Thank you for adding Harry to the angels page.

Love Denise

Alison,

What a brilliant job on the website. I was very touched by the video of Niamh - what a beautiful, brave little girl. I'll be checking back in often and sharing this site with others.

That was a beautiful video! I loved the song..so appropriate for such a beautiful angel. You have inspired me now to make one for Cooper.. I just know they are in heaven playing together right now. The site is great! Love, Sami