Dear all,
Since Aines death on 27th April 2010 we have had so many enquiries on stem cell treatment and how they improved her life. Hand on heart, she gave us the best 9mts of happiness in all the things that we only dreamed of that she did and i know people are thinking that stem cells had something to do with her death. I need to clear this up as they interfered in no way just helped her and Aine had a febrile seizure in the night that resulted in multi organ failure causing sepsis and her ultimate death. Unfortunally we didnt get to her in the night but medics said we wouldnt have changed anything but i can say her post mortum results said that she was clear of both bacterial and viral meningitise. Her metobolics were unremarkable and she was perfect from head to toe. Her inquest is following in a couple of months as we still want more details as a parent as to what happened but i can assure you i have no regreats that i did stem cell treatment and would do it again if she was here. I have since linked with china to help with the treatment and advise parents as well as prepare them for the trip. I will continue to work with helping autistic patients where i can with advice and knowledge of my experience and details on the treatment. Aine s memory lives on with her sister Aoife and we fund raise in their memory to help other childrens charities. Every child deserves the best and autism is not a disease and believe me one day there will be a full cure so parents dont give up on the ones you love.
Caroline kennedy
May 25th, 2011
Dear All who read this email.
It is with great sorrow that i write this email to inform you all that our little treasure Aine age 5.5yrs passed away on 27th April at 3.15pm after being ill the previous day. Aine died of meningitis/septicaemia and fought for almost 36 hrs to stay with us but this wasnt to be and now she is an angel with her big sister whom we lost nearly 3.5yrs ago at the same age in a traffic accident.
I will update her final progress last to the last day before she died but i will continue to work with autism and support the cause in her memory. RIP.
Her broken hearted parents matthew . caroline and her brother age 10yrs conor, her sisters roisin age 7yrs and Grace age 2yrs.
caroline , matt and family xxxx
May 6th, 2010
Hi everyone,
Aine has kept me so busy that time has got ahead of me and i need to keep you all up to date on progress. So much has happened since january and thank god all for the better. I have fine tuned Aines diet and this has lifted a big cloud over her, i finally feel we are starting to see the little girl that has been locked inside herself. We are now almost 2yrs free of antibiotics and Aine now fights any bugs and viruses herself. Overall she is a stong happy child that has been through so much and still manages to smile her way through the day from the time she gets up in the morning. Henning, matthew and Jon have been keeping in touch which has been great so we are kept up to speed on what is happening our in china.
Since my last post Aine has a new teacher in school which she has adjusted to very well and her sna gives me daily reports on what Aine is up to during the day. She is getting clever and some days she calls all the shots and decides what she wants to do for herself. Her language is coming on slowly and she is trying to put words together. Now when you ask her if she wants to go to bed she shakes her head or if she wants something to eat she nods up and down. She recognises photos and would say mom or dad and now even when the girls ask her where is scamp she picks up the photo. In ireland we have a big problem with sna teachers at present but this hasnt effected aine as she still gets one to one daily and all the girls love her but she loves attention herself.
We are back in crumlin on wed to start coming down off her epilipsy medication so please say a little prayer that we can get off these drugs and leave the seizures behind and cured. We do alot of other treatments with Aine and these are all helping. Her osteopath is so gentle and the best in the country so i have great faith in him and he has such a bond with Aine which is amazing to watch.
Before china Aine had no sense of awareness , she couldnt have a warm bath, she was very sensory and her life skills were very weak. , To date Aine recognises people and smiles or puts her cheek to theirs, she can now have a warm bath and the other day she fell in school and grazed her hands and took them up quickly and held them tight crying mom , mom. This in itself is a major achievement as she could not feel pain when she fell and now she can react. She is gone very emotional and when i go missing she checks all over the house for me shouting mom so she is aware that i am not there for her. You put on her coat and she will go to the door and say open. Her eye contact has been amazing and she is learning so much daily, her favourite thing to do is to watch westlife on the computer and sing away with it or listen to it on the cd player, She watches tv and laughs at the funny parts and now loves the simpsons.
We hope to return to china next year all going well as stem cells have done so much for aine and even her doctors havent the answers here what has helped improve her and she is growing so tall which is a good sign. She will take your hand when she wants to play and even in school will get on the swing in the sensory room herself. She loves the trampolene and enjoys lying back and watching the clouds or bouncing . At school she has done so well and now works hard for her rewards which generally is food ie banana etc.
To stand and watch Aine she is like any other child and we have seen her do so well in the last year that we look forward to what is ahead for her to enjoy.
Ok will keep you posted on her test results next month, so until then thanks to all who keep in touch especially all our china pals, maria and gretta, Don and Ella, Matthew, Darren and Dakota who have just completed another round in china which i hope goes well for Dakota. We love to hear how you are all doing and keep the emails coming. June and nana we also say hello and will be in touch soon,
Bye for now,
Caroline, matthew and Aine xxxxx
April 22nd, 2010
Hi Everyone,
Christmas is over us all now and had alot of snow since christmas eve, today we have 4ins so we will be in for a while. Aine was out in the snow and was fasinated for a while then she started to feel the cold and kept calling Mom so i knew it was time to come in. Up to christmas eve she was down with a headcold and a viral throat infection which triggered a slight seizure. Nothing to panic about as she bounced back and it didnt effect her appitite. Since our last post Aine knows what she wants and she is so active on her feet and so much stronger overall. One of the days i got delayed collecting her from school and when i went into her class she was crying her little heart out, her teacher never seen her so upset and she kept saying MOM MOM. She had her back to me when i entered the class and i called her name and she instantly turned around and smiled saying mom. This might seem a small thing to most parents but to the parent of an autistic child its huge. Generally in school she is so much more focused and does her work at ease and her concentration so much better. Over the christmas holidays some of her food i felt left her a little hyper so ive had to eliminate them from the diet and change the diet slightly which seems to be better so far and her bowel movement is so much better than before. I found her watching horse racing the other day with her day and i was stunned to see her reaction.
Christmas morning was amazing as she came down with the other kids and the sense of amazement on her little face when she saw all the toys from santa. She stood with her little sister Grace who is 1.5ys old in front of the toys staring at them while their sister Roisin 7yrs and Conor 10yrs were hyper with excitement with what they got. We put this all on video and watched her check out one of her toys Mr. Tickles which brought great sense of delight and fun . This was the first christmas that Aine reacted to and made it a great pleasure for us as a family after all we had been through over the last three years since loosing her sister in a trafic accident, Today i watched her as she just lay across the couch watching tv with one of her new toys in her hand, her baby sister took the toy from her to check it out herself and aine reacted the took it back from her and said bold baby. We feel that the stem cells are still working and she does have up and down days like any normal child but we have no regrets, she has changed for the better and we hope we will see more improvements. Aine has a long way to go but i do believe she will get there with a little help and stem cells did work for her, they didnt cure her but we knew that going out to china that this was not a cure but if they help bring a child or adult on from where they are, is that not progress in itself and proof that they do help.
Ok i will keep you all posted on further up dates and to all our friends that we met in china that are keeping in touch we say hello. To ella in colorado , well done you are an amazing kid and doing so well , keep up the good work and thank you to stem cells. We will update the blog again soon after we do all the tests we have before us and her appointments with her doctors in the coming months with her gut problems.
Bye for now,
Caroline, matt and Aine xxxx
January 7th, 2010
Hi all,
This has been a hard week for us all here as my daughter Aoife who was killed tradgically was 3yrs gone on 5/11/09 so it ha taken alot out of us. Aine had two seizures on 27th Oct , tuesday night and gave us a bit of a scare. She had to go to hospital but all is ok and she has bounced back as if nothing ever happened. We are not too worried on this as we knew this could happen with stem cells dooing their work. Since then she is in great form, her concentration is good and she is calm and quiet and very happy. In hospital they said there was so sign of infections, viruses etc and all was clear so i knew it was stem cells. Anyone considering stem cells please dont be alarmed by this as i do believe you have to go back to go forward. We will keep you all posted on updates but today she is happy playing with her toys and that is what counts. This is the first time she has had a seizure that it hasnt set her back so that is a plus. She has an appointment with her osteopath this week so see what he thinks of her and work from there. Her neurologist and paeditrician were in contact on thur night after working hours so im glad to have them on board. Will be back to keep you up to date soon. Bye for now.
caroline , matt and Aine xxxx
November 7th, 2009
Hi all,
Sorry took so long to let you know what is happening with aine but its been busy getting everyone back on track.
Since returning home Aines sense of awareness is amazing and improving all the time, she now sees things that she never saw before and takes down boxes in school and opens them etc. Her teachers have seen a huge change and she is very settled. She is now aware that she has wet or soiled and the girls in school started to toilet train aine in the last week and she has used the toilet with help. I never thought we would see this and this is one step closeer. When we give out to the baby for shouting or doing wrong aine starts to laugh and says bold baby alot in school. She is so relaxed and happy and you would never know she was in the house at times. Her attention span is better and now watches tv. Overall I have to say we have a new aine and we are pleased so far with the results.
This was a child that would have been hyper and hard to manage but now she is a pleaseure, between diet and stem cells she is a stronger child and holds her carriage much better. She is over 1 year antiobiotic free which is a record as prior to this she had medication once a month for 1.5yrs and was constantly down with a cold or sick.
We had re done her tests since china and she is things are going wellso we have alot to be thankfully for since china. Dr tony has been keeping in contact and is anxious to take her off her epilipsy medication with we hope to start next week as this is holding her back a little. Aine has still along way to go but anyone who has doubts on stem cells, well all you have to do is look at clips of aine before and after and see for yourself. Its not a miracle cure but it has helped so many people in the world with so many problems so how do you explain this, seeing is believing.
Ok will post next week when i visit her neurologist and see if he notes the change. will be back in touch to up date.
caroline , matt and Aine xxxx
October 21st, 2009
Hi all,
We arrived back on irish soil late on thur night after a long journey but not sorry that we made the trip. At the end of our experience in china we appreciated what we had when we returned and enjoyed the experience of the chinese culture. To all the staff who looked after aine i say thank you for your time and dedication and wish you all well in the future. John, Hawkim and Matt it was a pleasure to meet you all and i hope some of my tips will help in helping other parents and childrens stay an enjoyable visit to your country. Thank you all for the opportunity to help our daughter improve her life and for the experience of your culture. Go raibh maith agat! Love to all left behind, we will not forget you.
Best of luck for the future
caroline, matt and our little patient aine xxx
August 11th, 2009
Ok everyone , on the count down!
After aines doctors visit from tony this morning she got her las IV in which was difficult to find a vein as they had all been use up in her feet at this stage. Aine was in bad form today and she was very upset and agressive and eventually fell asleep when it was time for stem cell treatment as the stem cell delivery was late arriving. The nurse agreed to do aine last and it could be done in her room as she would get very upset if we woke her up, so we did. Everything started well and then i noticed that her ankle was starting to swell up so i asked the nurse to stop which she did, the iv had come our of her foot and the water that flushes through the iv first had inflamed her ankle but i didnt panic as i knew this had happened another patient and their was no harm done. In fairness its hard to keep a child still with an iv in their foot so this can happen, the iv was then put in her hand and we had no problems and the last stem cell treatment went through with no further problems, aine went back to sleep and all was well. Her little ankle went down quickly and the nurse checked her every couple of hours so all was well and no harm done. The nurses were so good with the kids and they always made them feel comfortable around them and had fun with them so they are to be commended fot their attention . Time now to pack for home and our last acupuncture is tomorrow morning and then its off to the mountains with michael the translator to see the sights. This was a great day and then we went for a buffet in a hotel near by to round the day off. Wednesday we didnt do much except say our good byes to al the lovely people that we had met on our travels and collected emails to keep in contact with all our new friends. Well time for be now as an early start in the morning for the airport. Sad to leave all behind but looking forward to seeing everyone again soon and having a reunion with all our new friends next year, who knows if all goes well we migh even go back to china again!
Bye for now and love to all in china and beike.
caroline , matt and our daughter Aine xxxx
August 11th, 2009
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