Friends and Heroes, What about Love? Portia's Song - Our Story

[tobiosnmakky]

Good video

[Sweetness42289]

Hi, my youngest sister has Alstrom Syndrome. She will be 3 March 5th. God Bless your family. Do you have a Facebook account?

[beautifulprincessmom]

We love your story and your video. And although we are SUPER excited... Sean was sad Millie's story didn't win... (bittersweet for us). We will continue to pray for her and your family, and hope we can keep in touch somehow. God Bless, Tami and Sean

[121Loopyloo]

My cousin has alstrom syndrome and although it's rare I know that doesnt mean its not important, I'm so proud of all he's done, of the brave man he's become, he's blind, deaf and has the rest of the symptoms of alstrom, but music is his inspiration, there are no barriers, he makes pottery now, one piece was displayed in the walker art gallery, I'm on a mission on twitter to raise awareness, please follow me and retweet, within temptation and 3 authors already have retweeted<3 @loopyloo121 xxxxx

[hohoho291]

@121Loopyloo Your cousin I am sure is proud of you too for working so hard to raise awareness. I think I have met your cousin at the annual conference, that is amazing to get a piece of pottery displayed, that is a awesome achievement. will find you on twitter, keep up the good work. xxx

[121Loopyloo]

@hohoho291 Thank you :) and I posted this onto facebook and so many of my friends were touched by this video and I think you are all so brave and strong :) best wishes for the future :) xxx

[ilovesprouts1]

waht a brave srong family xx

[hohoho291]

@ilovesprouts1 Thank you, and what a great user name, I love sprouts too. xx

[hohoho291]

Hi grumpydad1000, thankyou for you lovely words, yes it would be amazing if people did register to be donors after seeing this. x

[grumpydad1000]

what a beautiful video and song, and what a inspiring person you are to create this. I hope this encourages people to become organ donors. I wish you all the best for the future, Millie is so adorable. xx

[pikeymayfield]

Just Beautiful Michelle , I am trying to get as many as ppl as i can to watch the video, I hope you manage to win the £10000 but as you say just raising the awareness is important as well, Millie is just so gorgeous and such a inspiration

lots of love Deane

[hohoho291]

@pikeymayfield Thank you Deane, that is very kind of you, she is a georgous girl (like to think she takes after her mum ) Love to you too Michelle

[beru2005]

Ohhh, ich habe vorher noch nie von diesem Syndrom gehört... es ist sehr traurig zu sehen, was diese Genveränderung alles ausrichten kann.. Ich wünsche Ihnen Gottes reichen Segen und Geduld, sowie Kraft in den schweren Stunden... Millie ist so ein herziges Kind... God bless you so much... Ich drücke Ihnen die Daumen, dass sie den Wettbewerb gewinnen und somit den Betroffenen geholfen werden kann...

[hohoho291]

@beru2005 Vielen Dank für Ihre freundlichen Worte, es ist schön, dass ich die Gelegenheit haben, das Bewusstsein für dieses seltene Syndrom zu erhöhen gegeben. Hoffentlich, wenn wir erfolgreiche in diesem Wettbewerb sind wir in der Lage, einen Unterschied, nicht nur, um mein Kind, sondern um andere machen mit diesem Syndrom und andere seltene Syndrome. Millie ist ein wunderbares Kind und ich bin stolz auf ihre Mutter sein. xx

[msamandacarter]

Beautiful video, saw the link on Starlights FB page....... My daughter like yours is my hero, her photo is on their age (she recently swam ith Dolphins in Florida!) our children are such an inspiration. God bless you xx

[hohoho291]

@msamandacarter Hi Amanda, they certainly are a inspiration, I saw the photo of your daughter and the dolphins that must have been amazing to watch and for her swim with them. I was also admiring your profile pic, what a georgous pic of the both of you. We have been asked about Millie for Make-a-Wish but we are not sure what she would want to do just yet. God Bless you and your family too xx

[nannymonster1]

Your video was so moving that I cried. Mille is so beautiful, it is obvious that she is treasured by her wonderful family. xxx

[hohoho291]

@nannymonster1 Thank you, yes she is very beautiful, she bring such joy to our lives and everyone who meets her, we are truly blessed to have her in our lives. Your words are very kind. God Bless.

[beautifulprincessmom]

This is so amazing. We are in awe of the blessings that have been poured out on US from this endeavor. It is so cool that when we reach out to help others, God honors that by blessing US as well. I so hope that we can keep in touch. It would be an honor to keep praying for Millie over the years. I know my son would enjoy writing to you. We were talking last night about the fact that even after this contest is said and done... these videos will still be out there reaching people!

[beautifulprincessmom]

Hi. We loved your video. We are in the contest too :) But when my son saw your story, he said he would be happy if you won. We will be praying for you and your family.... and of course for Millie. I would love to keep in touch with you after this is all over, so we know how to continue to pray, very specifically. I agree with you, that this is just such an awesome way to make folks aware of the need that is out there. We are very grateful. Hope to stay in touch.

Tami and Sean Patrick

[hohoho291]

@beautifulprincessmom We loved your video too, the singing is beautiful, the film so inspiring and the little child so happy with their new shoes. Thank you for your prayers we are touched that others think and pray for us. Millie has been through so much and she has many challenges ahead, we are so very proud of her. Your son too sounds a very special person, it is a very special quality to think of others, but your cause is also a worthy winner and we also would be happy if you won. Michelle

[aggiedu]

Very moving video, inspiring stuff. Amazing to see how well Millie is doing, you guys are incredible! We wish we still had lovely neighbours like you down here, lots of love MIke, Dan, Monty & Flora xxxx

[hohoho291]

@aggiedu we have been blown away with the support for this video, thank you for your kind words. We really have been blessed with such kind family, friends and or course fabulous neighbours. Thank you for helping to raise awareness of this terrible disease. Much Love xxx

[19bf61]

Beautifully moving - good luck and best wishes for the future x

[debs154]

What a beautiful and moving film - I'm sure she brings you joy every day - love the picture of her in the mirror - good luck with the fund raising

[trickiechickie]

so moving I bet her smile melts your heart every day. bless her x

[hohoho291]

@trickiechickie Thank you she certainly does, I am honoured to have such a beautiful inspiring little girl x

[kevanhurdsfield]

What a touching movie, it brings sharply into reality how serious mine and other peoples problems are compared to yours. Millie is beautiful. God Bless.

[hohoho291]

@kevanhurdsfield Thank you, I read a quote this morning saying "Do not regret growing old it is a privilege denied to many". Having Millie has taught us so much we really are blessed.

[TheTessHarris]

Wonderful, moving, inspiring movie! Millie is a beautiful girl, so brave and still smiling. All the best. Tess (from Ciliopathy Alliance and PKD Charity)

[hohoho291]

@TheTessHarris Thank you Tess, lovely words, thank you. We are proud to be her parents

[kataggiekvm]

Amazing film Ben, I seriously didn't know how much you and your family had been through. Such an amazing and brave little girl. Much love and good luck with the competition xx

[hohoho291]

@kataggiekvm Thank you, she is a constant source of amazement to us, we are honoured to have her in our lives and to be her parents. x Thank you for your lovely words. xx

[fiona001ify]

Absolutely beautiful - I wish you all the well with Millie and with the competition x

[hohoho291]

@fiona001ify Thank you so much, winning this would be amazing and make such a huge difference to Alstrom UK, they work so hard to help the suffering of children born with this devastating condition. However just raising awareness of rare syndromes is also amazing and I am grateful for the opportunity to do that. xx

[69mechanik]

Brilliant film Ben, Big kisses to you and all the family from Scotland XXXXXXXX

[Subakwa]

All the best from Bean & us! X