POST  FUNERAL (15/01/10) (Sebby's dad, Roland)

So the funeral has passed now(12/01/10) much to our relief. It was a short service conducted by the Aberdeen Children's Hospital Chaplin--James Falconer, who was just perfect from our point of view for our family. He spoke compassionately and was eloquent in dillivering us the service Liza and I had requested. A big thanks goes out to James.

All the people who played an important role in Sebastian's life and knew him the most were present, and me and Liza were very pleased to see such a large presence of nurses from the children's hospital whom Liza, Tim and I and of course Sebby had grown to know and admire over the years. They played a huge part in caring for Sebastian and we are fully aware and appreciative of how close they became and the love they gave to our son. We will never forget. Thank You.

Also a big thank you for the presence and kind donation from Sebastian's special needs school (St. Andrews) which unfortunately he attended for far too short a time, but for the time he did spend there, we like to think that he did appeciate and benefit from the learning, therapy and fantastic care given by St. Andrew's staff in Inverurie. Thank you.

Friends and family battled the extreme weather conditions to get here from England and Ireland and we were very pleased to see them all again and hope to see them all again soon.

During Sebby's short life me and Liza have met many parents in Russian and U.K. hospitals that are in a similar position to us and either have very sick kids themselves or are themselves bereaving so I

14.01.2010 18:35 First of all we both would like to thank everyone for the donations you have made and everyone who managed to make the service in the crematorium.

12th has been and gone and seems like it all happened about 10 years ago, althought Im trying to go over it in my head so I don't forget any details, cos I heard many times that people say that "it's all a blur".... I don't want it to be a blur, i want to recollect every minute of it, cos this was the day I saw my baby for the last time in my life... Can anybody even imagine never seeing their child again?!?! NEVER...

I went in to see him for the last time and when I came out I was stood outside regreting that I have a husband and another child. With no drama at all, I just didn't want to live, I just wanted to be with him. I was tired of battling on and just wanted to be with my baby... And then of course, Edel - one of my very best friends, who made a huge effort and came from Ireland along with Treasa, said: you know, when I think of my dad, who passed away when I was 17, I think that now he is up in heaven with Michael Jackson! My god... THIS has saved the day for me for sure!!! We were laughing as hard as crying just a second earlier...and I was hoping nobody would come in and find us in hysterical laughter shortly after saying last goodbye to my son...I wasn't even worried about judgement, just that we can be taken away by men in white coats... :)

Anyway, the rest went smoothly and it was nice and relaxed and felt as if a huge weight has been lifted of our shoulders... that it was behind us and now we can slowly rebuild our lives from all this rebel.

We are now first day back home with no guests and left to our own devices, which is great, but really sad in a way...

10.01.2010 21:00 I'm sat listening to all the heartbreaking songs that my husband and I picked out for our son's funural, tears streaming down my face. It's still surreal and has not sunk in. I'm was able to laugh and joke and be "normal" and look after my 4 year old during the day for the 1st day, which comes as a huge surpirse to me. Almost feel guilty... how can I smile? am I suppose to?  

Absolutely terrified of tomorrow. Have to deliver flowers to the funural home and can see Sebby, which will bring me back to the horrible, impossible reality, I am sure... Still feels like he is just in hospital and we will go see him soon and then soon after will take him home. The only thing I find very strange is that I have nowhere to call every night right before going to sleep, I still take my phone with me to bed in case somebody calls from hospital, but nobody will call ever again, well, in a way, at least I hope I will never have to sleep with the phone again and expect THAT call.

Really really paranoyed about Tim: what if something will happen to him too? I will not survive it. I know it. 100%. Life will have no point then at all.

Funural in less than two days... Stupid really, but I think and worry about what will others think - I'm a product of a modern society. What if I won't have any tears? Will everyone think I don't care? Or not upset? What do people expect of you? I think, judging by everyone's messages and calls, they think I will be on the floor in the puddle of tears unable to go on. But I am able to go on, which, once again, find very weird. I'm not hysterical and not particularly depressed. I try to surpress my feeling in front of Rol and Tim.

Ok, my dad is on the phone... have to go.

This is our second page that we have decided to make after coming back from Aberdeen Children's Hospital after dropping all the medical, feeding and therapy equipment that used to belong to Sebby.

It was a very surreal moment, the fact that he is gone forever and not coming back has not sunk in yet.

While I was waiting for Roland to bring all the things we had into the hospital (my god, there was a lot of stuff...) I came across a leaflet on the reception desk, which was dedicated to UK Children's Neurological Research Campaign.

UKCNRC is a charity dedicated to improving treatments for children with neurological and neuromuscular disorders and this is what our little baby had: an unknown degenerative neurological disorder.

So we have decided to create this page and help these guys too because they aim to help children like our little Sebby and maybe with your help they won't have to suffer as much as Sebastian did and may life a much happier and LONGER life. Our aim was to gather £10 000 and now we have splite it in two equal halves of £5 000.

All donations go directly towards supporting the activities of the charity.

Thank you for remembering our little angel and supporting this cause, it really does mean a lot

Updates 0

Raising money for

BPNA- Child Brain Research

BPNA- Child Brain Research

Charity Registration No. 1159115

Child Brain Research supports and delivers research into child brain diseases across the UK. It links all the centres caring for these children to do coordinated research across the country into these often rare and neglected conditions. Thank you for your support.

Raising money for

Run by BPNA- Child Brain Research

Charity Registration No. 1159115

Donations 6

This is from Anne-Maree, parent from St. Andrew's School in Inverurie. Thank you so much!

Donation by Liza Ivanova on 28/02/10


+ £1.41 Gift Aid

Donation by Jillian Frain on 22/01/10


+ £4.23 Gift Aid

Donation by Natasha Scully on 14/01/10


Donation by Gavin Munro on 12/01/10


Roland and Liza, lots of love to you both

Donation by Esther Law on 09/01/10


+ £5.64 Gift Aid

With all sympathy, good wishes and gratitude.

Donation by Michael Pike on 07/01/10


+ £7.05 Gift Aid

Donation summary

  • * Online donations£110.00
  • Offline donations£0.00
  • Text donations£0.00
  • Total raised£110.00
  • Gift Aid£18.33

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