Hi all Lily supporters. We have just 10 days left of Lily's Givealittle Page. Any extra few dollars you are able to give to support our little girl would be so so appreciated. We can't do this without your help. Thank you to all who have helped her these last couple of years. We really really appreciate it. - Lily's Dad.
Here is a link to a further video, about yesterday's great little gathering for the T9M New Zealand families.
As part of Trisomy Awareness Month, today Lily celebrated Nate's 4th Birthday with the other Kiwi T9M kids. Amazing that these little battlers are only four of about 170 or so affected in a world of 7.6 billion!
We have been so thankful for your help. Lily-Grace's givealittle funds have al been used to date. She still requires more funding to continue with essential therapies & medications & medical treatment. Mum as full time caregiver is still unable to go back to work. Thank you all for your kindness
Sorry a long overdue update from Lily's family. Thankyou again for all those who have supported us over the last few years.
It's official Lily-Grace is now walking and thriving thanks to all your support and prayers. She is indeed a little miracle. We were told she would never walk but she is, in part thanks to you. Your support has meant her Mum has been able to take Lily to take Lily to physical therapy classes and pay for carer support for Lily as well.
Lily had 5 bouts of pneumonia last winter which was very challenging. A couple of months ago, after some surgery for very infected tonsils, and adenoids as well as grommets inserted she is now a new kid! Happier than ever. She can now eat more solid food and we are trying to work also on speech. (We are hoping one day she will talk).
Our next challenge is keeping Lily in her warm and dry home. There is a possibility we may need to sell it, unfortunately. Because Lily is thriving, we don't want her progress to be hindered or her to be moved from the environment she is most familiar with. Any financial assistance would be greatly appreciated. God bless you and your families. Thanks again. We want you to know we so appreciate the support. :-)
Yay! 1 year for our little Miracle. Thank you to everyone who has supported and loved and cared for Lily-Grace over the last year. If you haven't read her story it's here.
Hi everyone, Lily's folks have created and illustrated a blog site called "One too many zeros". This is a good way to see the perspective of parents of a special needs child and keep up-to-date as well.
Hi all. Good news on Lily's second EEG. Nothing obvious showed up which is great! We'll keep monitoring for any eye rolling. We'd prefer she did not go onto medication for seizures (although of course we will if we have to!) because it can cause developmental delay. So thanks for prayers and support this is a bit of a weight off for Lily who is currently behind in development regardless.
Lily now has her own website! This was created to tell her story (from her Daddy's perspective), raise awareness of Trisomy 9 Mosaicism and also support her ongoing development and support needs.
You can check the site out here:
Hosting her site costs money as well. (Web design was free from her Dad!) But any contribution you can give towards maintaining that site, here through Givealittle, would be appreciated as well. It's all to help our little sweetheart! :-)
Hi Lily supporters. Lily went in for a second EEG today as we have been concerned about some eye rolling of late. We'll get the results very soon. Just checking for seizures. (Hopefully not!) Amanda, thinks this is Lily's 136th hospital appointment today! Was not fun at all!
On a good note, Lily is babbling! "Baa" and "Muumm" seem to be the words we are hearing. Nice to hear proper baby sounds. Looking forward to her first birthday in a couple of weeks. Thank you for your kindness by donating. We also had the hospital physio come in and assess Lily for possibly getting a walker. This update from Lily's Dad.
Our little miracle, has her first birthday soon. April 21st in fact. We are looking forward to celebrating her journey so far. (And what a year it has been!) Thanks again to all who are helping support her future. Big hugs, from Lily's Daddy.
Hello Team Lily. Our little angel made the papers today for Trisomy Awareness Month.
Please have a look:
http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11811584
