A Hard Life Demi-Leigh Rodden

My life up to 1 1/2 with MPS type1 Hurlers

Category:

Education

Tags:

• Demi-Leigh Rodden
• Hurlers
• MPS Type 1

[Hurlermamman]

This was a beutiful film. My son has mps1 Hurlers syndrom and is 4 years old now, 2years post BMT.

Good luck

[djdave1603]

Thankyou for your comment our Daughter is also 2years post BMT, we hope everything is going well for you all as best as it can. Good luck to you all, nice to have a comment from someone who knows what we are and have gone through.

[styler20111]

...... JAIME-LEIGH did manage to stand & take steps while she had casts on but she now cannot due to not having any support for casts. she has very little muscle bulk in her legs therefore she cannot support her body weight. These kiddies are little fighters, & put prospective on life & def proves a point to people that think they have problems! nice chating, hope to speak soon x stacie x

[styler20111]

JAIME-LEIGH was born with talipies in both feet. she also has fixed ankle & knee joints. we did think she had hip dysplasia but she doesnt. she has weekly castings, wich shes been in since only 1 week old. she also has had the same BOOT & BAR shoe as Demi. they didnt work for her & she is now in AFO shoes. she has had 8 operations. & should have had physio but hasnt yet. that is only just getting sorted.......(2 of 3 messages, have continued in other message).....

[styler20111]

hi, i know DEMI'S half brother. brother ARRON. he told me to have a look at this video. as my daughter had similar problems. brough a tear to my eye. i def feel for you, can totaly relate, especialy when it come to hospital visits & operations, having to put your faith in doctors :( funny enough my daughters name is JAIME-LEIGH. & she adores arron, he is fab with her. Jaime-leigh is 2, 3 in may. she suffers from ARTHROGRYPOSIS..... (HAVE CONTINUED IN OTHER MESSAGE AS REPLY WAS TOO LONG) ......

[xcelcheerchick]

god bless

[kaitiekay28205]

i have a little red-haired princess who also has MPS1H. so many of these photos of your amazing and beautiful daughter could have been taken from our own albumn. the likeness is increadible - especially in a couple of the photos.

Thank you for making such a beautiful video!

[kimberlyvess]

This is a good way to tell others about MPS. We found out that our son has hurlers syndrome on his 2nd birthday april 09. He is Day + 31 of his BMT and was just extubated today from his breathing machine. He is doing much better than he did the last 3 weeks and i hope its smooth sailing from here. We know what A Hard Life means. Thank you for posting this video :)

[toeztocy2003]

Blessings and love being sent your way.Keep positive and know that someone out here is praying for your child to recieve total healing God bless

[sardev163]

i wish her the best of luck!!! i am so sorry she had to go through this all!

[Black92hawk]

I am so sorry for Demi. She is a precious little girl. God will keep her alive and make her live a wonderful happy life. May God Bless your entire family!!

[TumbleAndCheer101]

Shes very precious.