Monday began with putting practice
I threw on some sequins
And hotfooted it over to Old L's house for a girlie lunch. Everything was beautiful
Vegetarians and Vegans were well catered for
And there were tonnes of attractive vignettes about the traps. Look-
When I got home my friend H from Housewife in Heels had left this attractively appointed bee box in the FF letterbox!
She'd actioned me a bee and bee hive Christmas bauble with her own paws. I'm Thrilled!
Thank you so much!!
Having a baby and becoming a mother has made me very happy. Not a day goes by that I'm not grateful that my son came into my life.
I love meeting other mothers of little boys and I am always moved and affected by stories of the suffering of children.
Recently, I was lucky enough to connect with the lovely A over instagram.
She has two beautiful sons.
This is Hugh, her eldest little boy, who is 3 and a half.
Isn't he gorgeous?
At about 8 and a half months of age little Hugh started suffering from seizures and it was discovered that he had Alpers Syndrome. This is a genetic disorder that is degenerative and life limiting. Symptoms include seizures, organ failure, strokes, and low muscle tone leading to quadriplegia, spasticity, progressive dementia, blindness and deafness.
There is no cure and no way to impede the progression.
This is divine Hugh at about 9 months old soon after he was diagnosed
And this was him in November 2011 after his first stroke. Poor darling.
And this is Hugh today. You can tell he's cheeky!
A's extended family is in the process of setting up a foundation which aims to raise awareness of Alpers Syndrome, support families with the syndrome by providing a virtual place (website) where they can connect, establish a way of helping people with information and medical support options and support medical research and treatments. Hugh's Uncle is going to raise money by cycling from Brisbane to Byron Bay and back in The Tour for Alpers.
I'm hoping that the FF Readers can band together as a team to give this incredibly worthy cause a Good Start.
I'm also going to put a permanent link on my side bar so it will be easy for you to access the site.
I'm also going to put a permanent link on my side bar so it will be easy for you to access the site.
xxxxxx
Since becoming a mother I can hardly bear to hear about children suffering...he looks like a gorgeous little boy...I am off to the website now to see how I can help.
ReplyDeleteThanks C, isn't he gorgeous? I have so much admiration for the strength and stoicism of the parents in situations like this x
Deletehad never heard of this FF, thanks for the link. xo
ReplyDeleteI had not heard of it before either xx
Delete"luff" the sequins and girly lunch, do not like the suffering of little boys. Tears at this mama's heart strings…..
ReplyDeleteI hear you, it is very sad. Hopefully awareness will help x
DeleteThe little darling. I too can hardly bear to see little children suffering and feel for his mummy and daddy. He looks like a beautiful gorgeous little boy. Yay for HiH making you that cool xmas ornament. What a legend!
ReplyDeleteHello, I can't bear it either and feel for the parents and family as well. HIH is deadset clever and kind xxxxxxx
DeleteWhat a gorgeous little boy that Hugh is.. he has a beautiful smile.
ReplyDeleteI get very sad when I hear of horrible things happening to children.
I started to cry on the bus this morning as I read the news on my iPhone - the story about the poor little girl in Bangkok. Heartbreaking.
His smile is divine. There is so much heartache is the works right now JP. So many tragedies. xx
Delete*world not works x
DeleteWhat a wonderful gesture! I wish this plucky little guy all the love and luck in the world and sending many hugs to his family. I had never heard of this condition before - I hope science whups its ass good and proper very soon. (((Hugh))) Also, luffly bauble btw :)
ReplyDeleteThanks Alison!!! He is such a beautiful boy and I hope science can get its act into gear and help him too xxxx
Deletemust be so frustrating that there are so few answers. It's 2013 for goodness sake. heartbreaking for the family and little boy.
DeleteDearest FF,
ReplyDeleteThe golf putting practice and baby snaps are sweet. Thank you for mentioning this disease. I'd not heard of it and agree with others that Hugh is very beautiful, wishing him and his parents all the best L x
I used to think the answer to what do you want your child to be and the response being healthy was so boring but as I get older i think that is the obvious answer...I hope the Alpers tour is a success for Hugh and for others...x
ReplyDeleteI used to think that too. But no it's all I want. Thanks N xxx
DeleteBeautiful FF
ReplyDeleteYou have such a big heart! Thankyou. Very weepy reading tonight. When Hugh was diagnosed I was bawling about my perfect baby not being perfect and Mum said 'none of us are perfect'. It helps when I look at others with 'perfect' kids and I realise we all have challenges. But he's deadset nearly perfect! We visited all the neighbourhood dogs in the standing frame this morning with treats. They luff him to bits! Putting practice is key. Lots of love. Thanks again xxx
None of us are perfect. It is heartbreaking to watch your child suffer and extreme maternal distress is awful. Wonderful about the standing frame and the dogs.
DeleteTake care of yourself and you lovely boys.
You are the one with the big heart. xxxx
FF,
ReplyDeleteOne of my kids is having a situation right now, having trouble "getting over Fool's Hill" as my mother-in-law describes moving into adulthood. My husband and I were walking in the park, and we stopped to remark to a woman how cool her dog was catching a Frisbee. And then we saw her grown daughter in one of those special handicapped wheel chairs. It was obvious this young woman couldn't walk or talk, but her mom was out with her and the dog in the park. Life goes on. It was such a reality check for us.
Many prayers for little Hugh and his family.
Life does go on. Thanks Sheri xx
DeleteHe's the same age as my little girl and it just about breaks my heart, his story. Thanks for giving us the heads-up about this cause, FF. Sending prayers for him and his family that they may get through this in the best way. Will also make a note to send money after the Christmas madness is over xx
ReplyDeleteThanks Sharon, it is heartbreaking, he is just a bit older than my boy too x
DeletePoor little Hugh , it seems there is a never ending list of syndromes , I will check into the site as like others I hadn't heard of Alpers before.
ReplyDeleteYesterday i was in the city and of course had the face pressed up against the window of certain high end shops. At Chanel in a narrow side window stood a very washed out looking mannequin in a cream knit pants and top combo. The v necked top had slipped so a nipple was visible as well as the mannequin's poor scratched chest. Her pearl and CC necklace was all twisted . Meanwhile inside the shop was empty ..and four shop assistants stood around yakking.
Couldn't help thinking Mlle Chanel would not have been impressed
Isn't it great Tabitha's blogging again?
Had not heard of it either. Awful re Chanel! and yes re T xx
DeleteMlle Chanel would probably have sacked the lot of them. She fired a loyal staff member who had worked for her for years when she asked for a raise. In our church Op Shop, we're so particular about the way our mannequins look (I dress and style the windows). So it's quite appalling to hear about Chanel. Pamela xx
Deletewhat a beautiful little boy. prayers for him and his family.
ReplyDeleteThankyou D x
Deleteprecious Hugh, off to donate now, thanks to the parents for sharing the story.
ReplyDeleteThanks Anon x
DeleteWhat a beautiful little boy and family.
ReplyDeleteSo sad.
Have never heard of this disease before and hope that research can soon find a cure.
The strength these families show is humbling.
I'd not heard of it either and had to google it. I agree that the strength and commitment is inspiring and humbling, thanks for your comment x
DeleteOh FF
ReplyDeleteMy heart is breaking
Love & best wishes to darli g Hugh & his family
Thinking of them all
Merry Christmas
X A
I know, it is very sad and I am in awe of the families that deal with this high level of worry and stress 24 hours a day.
DeleteThe least we can do is support research so that once day there will be some answers and hopefully a cure xxxx
I have a dear little Hugh of my own, who is just a little younger and well, words are just so completely inadequate in such situations aren't they?
ReplyDeleteBut I am off to make a donation now and Ali if you are reading, I hope you and your boys have a magical summer.
And from one Hugh to another Merry christmas.
Emily xx
Dear Emily,
DeleteThank you for this beautiful comment. Words are inadequate. I am humbled by the strength and fortitude and grace of parents facing uncertainty. Happy Christmas to you and your family, and I know when A gets time she will read all these comments xxxx
I have in my profession as a teacher of special education a good understanding of syndromes and their affects on learning and development. But I wasn't until I became a mother of a child who happens to be visually impaired that you really begin to understand "difference". You grieve, blame and cry....until you realize you need to be there for your child and advocate.bits a tiring labour of love...but you come to accept your special gift. I am glass you shared this story and I wish Hugh and his family nothing but love and light...
ReplyDeleteDear Dime,
ReplyDeletethank you for this beautiful message. Being an advocate would be a tiring labour of love. I am glad I could share this story too- how could I not? I wish you and your family strength on your journey too xxx
Dear FF,
ReplyDeleteHow wonderful of you to use your blog to get Hugh's story out there.
Hugh has a killer smile just like boy FF.
Wishing Hugh and his family the best Christmas ever.
KateBx
I luff a killer smile!
DeleteThank you thank you for all the incredibly kind supportive comments. It means a lot to know that people care so much. Dime, best to your family too. Its another level when you experience this life first hand. Emily kisses for your little Hugh from ours (: So much kindness expressed. Its incredible and overwhelming. Thank you xx
ReplyDeleteEveryone cares!
DeleteWishing you all the best Ali xxxx
Harness the power of the blog! I, like other commenters, had never heard of Alpers Syndrome before. Childhood diseases always seem so much more cruel. It is important to do something if you are able especially at this time of year when giving is so important.
ReplyDeleteI agree that childhood diseases are particularly dreadful. Thanks T x
DeleteMany thanks FF for bringing this to our attention. The hardest thing as parents is to have a child with a serious illness. Particularly when there's no cure. My heart goes out to the wonderful parents of this dear little boy and to all the others like him. Pammie xxx
ReplyDeleteDear Pammie,
DeleteI agree it is incredibly sad and my heart goes out to them all as well, miss you xxxxx
Tears after visiting Hughie's site there are no words
ReplyDeleteGlad you liked the bauble! Thank you for sharing Hugh's story. So inspirational. I will hold my boys extra tight tonight x
ReplyDeleteI'll be having lots of positive thoughts for the cutie that is Hughie!
ReplyDeleteBreaks my heart. I can't imagine how his parents are feeling. I have never heard of this before. Great to realise awareness and with awareness, money for research, Unfortunately, some of the lesser known syndrome/diseases/genetically linked medical issues receive hardly any funding at all and little or no support for families and patients dealing with it all. Great work FF bringing it to your readers attention. We all buy coffee or a treat. Even the cost of one coffee add's up :)
ReplyDelete