# Sad story, but I need your help please! **UPDATE page 3!**



## jackson's mama (Apr 27, 2003)

Hi mamas,

Last week we received horrible news... my sweet ds has been diagnosed with a neurological disorder and will progressively lose his motor skills







. He is 17 months old.

He currently still has most of his motor control so we sling regularly using the hip carry. As this disease progresses he will lose head and neck control, and I need some help with finding a sling carry that will be able to fully support a larger child (he weighs 21 lbs now). I currently have an adjustable ring sling, a mei tai, and a KKAFP, but I am SO willing to get something different if it will help.

Can anyone help me with suggestions? I hate the thought of him spending much of his time in a stroller or wheelchair, and he will hate it too, but as he grows and loses strength I won't be able to sling or carry him in the usual way. I want to carry my baby near to me as long as I can. Thanks for any help you can provide.

Peace and blessings,
D'Anne


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## amyandelle (Jul 5, 2004)

I don't know what kind of carrier you can use, I just want to give you some hugs mama!!!
































































Amy


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## merpk (Dec 19, 2001)

First ... so sorry to hear this ... and sending light & strength energy to you and your family ...

Second ... am thinking the ring sling is your best bet (not that I have such wide carrier experience), just because of the variety of positions that the child can be held in, and because size is pretty much not a factor. I have carried my 4yo DD in a sling, and while it is heavy, it *is* doable. And the shape of it can be pulled up even with a larger child in so many positions, and is specifically good for head support ... have carried my toddlers in reclining/sleeping positions in the sling very often, and their heads are fully supported if the sling is pulled up well.

But like I said, my carrier experience may be long, but it is also narrow. So FWIW ...


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## jackson's mama (Apr 27, 2003)

Thank you both for the hugs... they are much needed and much appreciated







.

*merpk*, can you describe the reclining/sleeping position a bit to me?


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## IdentityCrisisMama (May 12, 2003)

Hello, mama

First, hugs to you. Are you getting the help you need with this news? I can't imagine. Don't really know what to say other than that I feel for you.

About the sling, yea, I could imagine that another sling would work better as your child gets older. First, the upright carry in the ring sling could work two ways - with his head at the ring or opposite side (leaving plenty of room to tighten up). I put the butt in first then lay the rest of the body in while I remove my arm - then tighten the sling. You can also do a reclining carry with just the legs out at the knees. Also the carry where the legs are crossed in front but my DC never liked that.

I have one of those long carriers that you tie in all kinds of ways (just a long piece of fabric). It works really, really well - IF you get it tied on there well. There's about a billion ways to tie it on this Swedish site - I'll look for it. You could get quite a bit more support for your child's head with this type of carrier. I got mine on e-bay for like $20. I could find the seller if you want. Also, you could just buy a large piece of fabric to test - that's basically all these are anyway.

There are also quite a bit of carriers with more structure that I've never heard of - maybe some mamas can help with those.

I don't know if this is an option for you because it's not quite skin to skin baby carrying but I would consider one of those backpack strollers. There're really city friendly (I see your in the SF area) because there're small as strollers. You can lift your child on and off your back as you get tired or as he gets fussy and wants to see more at your level. I used one for a trip along with the sling and it worked well for long days. I was in love with this borrowed contraption until DC's feet got caught in the wheel cover - ouch! I imagine that they have some better designs out these days but I though.

One more thought, being in SF you may find some shops that would be willing to lend you a sling to use for a few days. There were definitely shops in Santa Cruz that allowed that. Also, I'd frequent the consignment shops.

Gotta go - DC wants something. Wishing you and your son well, mama.


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## purplemama (Jun 4, 2004)

I'm sorry, I can't offer any advice, but wanted to send some














your way. I'm so sorry for what you must be going through. I do have two MamaBaby slings.... I don't know how to use them very well, but using the two together, I think might offer a lot of support. But I'm not very good with ring slings, so I wouldn't know how you would wear them. I live in the Bay Area, too. Maybe if you're close enough, you can try them out and see how you like them? PM me if you're interested.

I hope you find something that works for you.


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## greenluv (Jul 26, 2002)

I second the idea of a wrap carrier. This website is quite helpful with all the ways to carry in a wrap. Here's the Link . I believe this is a swedish site. Just click the words beside the folder icons. It's well illustrated with pics so you souldn't have any trouble. Also, some of instructions are in english. Hugs to you and good luck!


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## Slackermom (Jul 23, 2003)

I have no advice to offer, but I wanted to send you some hugs.










































I hope you have lots of support to get you through this trying time.


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## kofduke (Dec 24, 2002)

s

Mama, I am so sorry for what you're going through, and I admire your strength in looking for a way to keep your baby close. While I haven't used one, I would think a wrap carrier like a didymos might be your best bet.


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## Artisan (Aug 24, 2002)

I am so, so sorry to hear this sad news. Big hugs for you and your family.


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## Kim22 (Jul 14, 2003)

Maybe an Ergo used with the hood up to hold his head, like this picture shows? http://ergocarrier.com/ergobabycarri...back-large.jpg








Big hugs to you and your baby.


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## USAmma (Nov 29, 2001)

I just wanted to tell you how sorry I am for you and your family. :-(

On my reflux board there's a mama who has a child with CP, who does not have good neck control. She uses a sling with her child. I think she just rests her head on her mommy's neck and shoulder.

She also uses a pillow similar to what you'd use to pad a kitchen chair, but longer, to help her dd get head control when she's sitting in her doorway bouncer. I'll bet you could put him in a frame back using such a pillow for head support if you had to.

Darshani


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## jackson's mama (Apr 27, 2003)

Oh mamas, thank you all so much for the support. Our family is nearby and is helping, but nothing can really take away the pain. We are focusing on one day at a time, and enjoying our precious little one as much as we can. Here's a picture of him with DH if you are interested: http://www.dlovesmarshall.com/galler...2294.sized.jpg

OK, for the sling suggestions... I didn't think of a wrap sling. This is a great idea! Like a Moby, right? There is a local store that sells something like that, maybe they'll let me try it out.

*purplemama*, thank you so much for the offer







. I have a couple of ring slings, is that what mamababy slings are?


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## KyleAnn (May 24, 2004)

Seems you are getting some good sling advice already! I just wanted to add some extra hugs, good thoughts, and prayers for you and your family.


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## Changed (Mar 14, 2004)

I'm sorry to hear about your news. It's very hard to face a diagnosis like that yet at the same time it's healing. You may not be there yet.. I does get easier.









I haven't figured this out yet myself. Ihave a 22 pound 25 month old and I can't really sling her. SHe has very underdeveloped motor skills. SHe can hold her head up but can't really focus on anything while she's working that hard. She can't sit or roll over if that gives a better idea. I tried making a wrap last night out of jersey but she sunk down alot. It's really tricky finding something and you still want and need to hold them close. We have the other issue of her legs being super floppy and we are supposed to keep her knees together as much as possible.

If you find anything that works please let me know! I have a friend who's daughter has Rhetts syndrome and I'll ask her if she's got any ideas.


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## BinahYeteirah (Oct 15, 2002)

bs"d

I don't really have any sling advice that you haven't already recieved, but I just wanted to offer my







s. I love that pic of your ds. He is so beautiful; I am in tears wondering why this had to happen to him. It must be so hard to have seen your ds learning skills that you will now have to watch him lose.


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## Viola (Feb 1, 2002)

I'm so sorry about your sweet Jackson. I don't have any new sling advice to offer, but I wanted let you know I'm thinking of you.


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## sunshine*girl (Jun 22, 2004)

Sorry to hear the news!

If you are interested in using a wrap go to www.mamatoto.org. There you can get directions for making your own wrap. Also there is a ton of information there, different carrying styles shown step by step-some animated.


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## mommybritt (Nov 19, 2001)

Many, many hugs to you. I'm so sorry to hear about Jackson, how heartbreaking. That's a great picture of ds and dh - completely adorable







Sending you much love and light...

You've got some good suggestions. A wrap would be my choice too as the positions are virtually endless and you could easily adapt to provide him with more head support.


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## TurboClaudia (Nov 18, 2003)

Oh mama, many many hugs to you...









The wrap sling and the Ergo would be my thoughts, too, but I don't have any experience with slinging bigger and older babies since ours is just eleven weeks old...

peace and love to you and your partner and jackson and your family...

warmly,
claudia


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## Misti (Aug 19, 2004)

Looking at the picture of your beautiful little boy, I got all teary! I am so sorry to hear that he has a neurological disease!







(

I haven't used a podaegi, but I wonder if as he gets older you might be able to adapt that to carry him as he gets too heavy for a ring sling...it would be better for your back, if you could make it work.

(http://oranckay.net/podaegi/)

Good luck, and I'll be praying for you.

Misti


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## alaska (Jun 12, 2004)

Hi
First, I'm so sorry for your news. I'm wishing you and your family a lot of strength and courage.
Second, your son is absolutely adorable and is the spitting image of his dad. great picture and thank you for sharing.
third, I don't know if this has been recommended, but I think a wrap might work well for you. It can be used in an infinite number of positions, and is a two shouldered carrier - which will be comfortable for you for long periods of time. There are expensive wraps like the didymos and less expensive wraps like gypsymama.com.

good luck and best wishes to you and your family.
amy


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## mamapink (Jul 11, 2004)

I am so sorry, I also got tears in my eyes looking at your beautiful son.
many hugs and strength to you.

I think a wrap is a good idea but IMO a woven wrap would be better than a stretchy one for better support. I have heard that the stretchy ones can stretch out a little with heavier weights.

We have an Ellaroo and love it, but I have no experience with the moby.

Im sorry you and your family have this happening, good luck finding a carrier that works the best for you and your son.


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## purplemama (Jun 4, 2004)

I'm sorry, I should have put a link in for the MamaBaby slings before. They are ring slings that use interlock woven fabric, so much more stretchier than usual ring slings. Take a look . There are also some photos of what you can do with two of them at the Willowbean site.

That's a great pic of your DH and DS, btw.


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## Quaniliaz (Oct 11, 2002)

to you, mama. What a hard thing to go through - my dd is nearly the same age, and I just can't imagine the emotions you must be having. You are such an awesome mama for thinking of things that will help him so soon after hearing his diagnosis!!! Way to go!!

1. I think the absolute best sling to use would be an asian stye carrier - not the traditional ones that are small and square, but more like the ebmt or the kozy. You could even get one custom made that had a little stiffer/larger head support. The weight would be well balenced, and it would offer a lot of support to your son.

2. A lot of people have recommended a wrap carrier - I would say to definately try somethng like an ella roo for this, vs the other stretchy carriers. I stopped using my stretchy carrier around 20 pounds because my dd sagged too low...it wasn't necessarily uncomfortable, just unweildy.

3. 2 adjustable slings was also a great idea!

Hang in there!!


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## chellemarie (Jan 17, 2003)

I rec a moby. I carry my 25lb 18mo in it easily and think that you'll be able to do the hug hold and the stretch of the fabric will give him support without being too stiff like a woven fabric.

I am sorry you are going through this.


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## Tupelo Honey (Mar 24, 2004)

This is the position merpk may have meant. I think it will work for you, the op as well as the mama with Meg. It says for small babies, but I can actually still do this w/ my 22 lb almost-two-year-old. Hth.


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## mrzmeg (Jul 16, 2002)

Oh mama, I'm sorry
















My favorite carrier with my toddler is the Ergo---comfortably distributes the weight, but easier to use than a wrap-around or ABC. You can use it in the front or the back and the head support works really well. I like stretchy pouches also, but I have a bad back and the Ergo is the only carrier I can use for extended periods of time now.

I hope you're able to find something that will work for you two.


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## Ravenmoon (Mar 2, 2002)

Sounds like you got a lot of great advice.Do you know to what extent he will lose his abilities?I would get him into Occupational and Physical therapy early on so they can work with him in possibly maintaining and learning skills.My daughter has mild CP and is very clumsy and weak.One of the girls in her class has a disorder that has left her with little neck support and limbs that don't work right.She wears ankle,wrist and knee supports and is able to get herself around by swinging her body around with her wrists.It looks painful but she has developed callouses in all the right areas.She even gets around on cement!She has had several surgeries to help her as well.She has the sunniest disposition of any child i have ever met.SHe is so awesome with her new baby sister too.She uses a great lightweight stroller on the side.When the sling gets to be too much there are many great inventions out there now.

Hugs and many thoughts for your family during this journey.


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## Jane (May 15, 2002)

I have seen a back carry work really well for a little downs girl with low tone. She was probably 50 lbs, but here gmama carried her just fine on her back. She slouched against her for support, but she was very stable. I think a pogedi might good as he gets heavier.
If all a favorite carrier or hold doesn't give enough support, you can always suppliment with a second ring sling to add support at the shoulder or hip.


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## pamelamama (Dec 12, 2002)

((((hugs))) what a beautiful family you have! I think wrap carrier is a good suggestion.

you might also want to post in the special needs forum to find other mamas with similar situations.
x
o
xo pam


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## beanma (Jan 6, 2002)

the ergo is very comfortable for me and my little chunk. so very very sorry about jackson. that picture is so sweet.


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## jackson's mama (Apr 27, 2003)

Mamas, thank you again so much for the advice, support, and hugs. You all are wonderful







. I have many things to try now, and this is exactly what I need to find what works best. I have an MDC mamafriend who teaches a sling class, I'm hoping she'll let me try out some of her slings that I don't have to see how some of your suggestions work out.

Thanks again, and please continue to post ideas if you have them







.

Peace and blessings,
D'Anne


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## kimmysue2 (Feb 26, 2003)




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## Mariposa (Nov 12, 2002)

just wanted to send hugs and prayers for you.


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## Mama25 (Jul 20, 2004)

Your picture of Jackson and daddy is just adorable! Many







to you and wish you much strength.


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## mom2ella (Aug 26, 2004)

I have no advice on a sling but wanted to send prayers and hugs your way.


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## moon_goddess (Jun 19, 2004)

<---for your family good luck

it isnt really a sling but a damn good carrier. babytrekker, it holds larger kids and has great padding and support for mama's backs. you can find them on ebay and they have a website www.babytrekker.com i have one and me and dh love it!


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## abigailvr (May 17, 2002)

D'Anne, first of all







to you and your family.

Second, I would recommend a woven wrap like the Didymos, Girasol or Ellaroo over a stretchy wrap like the Mobey. I have been told that the thicker Didymos and Girasol are better than the Ellaroo for heavier children, but I don't have any personal experience with them.

Good luck!


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## MamatoDov (Mar 30, 2004)

Jackson is so lucky to have such a loving mama. Have you thought about a kozy carrier or other kind of abc? I know the kozy has some padded head support if you keep the baby's head inside. I use it to carry my 25 lb. ds every day, and don't plan on stopping anytime soon, so it distributes the weight very well and is quite comfy. I hope that helps.


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## Delta (Oct 22, 2002)




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## sarahloughmiller (May 22, 2004)

Jackson is beautiful! I also have a Jackson that was born 3/1/04. I can not imagine what you are going through. Hugs to your family and I hope you get through this OK. I vote for a wrap also, or maybe you could have a sling specially made for you with extra support?


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## Quaniliaz (Oct 11, 2002)

I just thought of another idea that hasn't been brought up - how about a fleece sling?? I really like how well they distribute the weight over your whole shoulder!!!

I think you just need one of each...







Post in the Random Acts of Kindness Swap Thread and we'll send you what you need.


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## campingmumma (Aug 13, 2003)

D'Anne,
Your son is beautiful and many hugs to you and your family









If you son was diagnosed with SMA, I may be able to link you some resources. Our former neighbors are very involved with Families of SMA.


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## morgainesmama (Sep 1, 2004)

We wree recently talkign at thebabywearer about how Mexican women wear their little ones up to age 9 or so in 1 shoulder carries in rebozos while at market. Your son is so lucky to have a mama like you who cares so much for him!!!

I second and third the suggestion of a wrap carrier. I wore my son on my back at a week old, with almost no muscle control. The piggyback position of teh back WCC would be comfortablr for a larger child ... I still carry my 40+ pound 4yo this way. You can spread the fabric to cover his arms and back up to his neck to support him.

Normally I would heartily recommend gauze to you; I love gauze wraps beyond all else, and think they're great. But the fabric of most gauzes is thin; I would recommend either a heavy gauze *they;re out there; I have a few lovely thick ones) or a heavier fabric. I wouldn't think a Didymos would be what youwant; they're 22" wide and that wouldn't be enough to tuck in an older child well in a back wrap cross carry. A guatemalan hand-woven would be lovely, though expensive. They usually come in 30" wodths, and at our local fabri cstore they're $15-#25 a yard. You could eaily hem of fringe the edges yourself. I think EllaRoos are about 30" and cost about the same, and have no sewing either, just fringed and knotted ends. And since there are no seaams in a wrap carrying heasvier childern is less of a concern then in carriers w/seams.

I hope this helps ...

Kristi


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## Treasuremapper (Jul 4, 2004)

{{{hugs}}} You are one brave mama.

I have a very large baby (22 pounds at five months, now at least 26 pounds at 11 months). It was especially challenging to carry Rosie when she was still floppy but heavy.

I love zolowear slings, and they work really well for us. But when wearing a big baby for a long period of time, the general recommendation is to use a carrier that goes over both shoulders to help distribute the weight. I borrowed a friend's ergo the other day and I really liked it a lot. It seems like it would offer more support as your baby loses some of the control in his head, but that you could still hold him close to you.


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## jackson's mama (Apr 27, 2003)

Mamas, thank you again so much for your continued support and lovin'. These past few weeks have been so confusing and heartwrenching for us, and we are in a state of limbo regarding our son's actual diagnosis. In some ways this is good, because we can continue to hope for the best possible outcome. But the fact remains that our sweet boy is losing his muscle tone and lack of a diagnosis doesn't change that. _*sigh*_ We continue to persevere, and the good wishes and prayers of mamas like you all carry us through.

I have tried an ABC-type sling a few times, and Jackson doesn't seem to care for it even in the front position. Really bums me out, because I spent so much time toiling over the thing and its so pretty







. I think the problem is that his legs are beginning to get a bit stiff in the hips and the position isn't comfortable for him. I think an Ergo would have the same problem for us.

I'm not familiar with a wrap at all. For a larger child, do you carry them on your back? Or can you do a front carry facing out?

Thanks again for all the help and support







.

Peace and blessings,
D'Anne


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## Mama2Xander (Jul 3, 2004)

Sorry I don't have any advice to offer, just wanted to send hugs and best wishes to you and your family. Jackson is very lucky to have you as his mama.


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## morgainesmama (Sep 1, 2004)

A back carry is comfortable and ideal, IMO, bet a front carry in a wrap is equally comfortable. At http://mamatoto.org there are photos and videos.

Kristi


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## SMPH (Apr 25, 2003)

D~~I just bought 6 yards of fabric yesterday to play with. It's 45 inches wide and a woven so no stretch. I carried Mister Aiden on my back and then front while I cleaned parts of my carpet (stupid cats). It was comfortable and cheap. Even cheaper if you use a 40% off coupon from Joann's (sign up online nad you'll get an email). It's not pretty (unbleached muslin type) but it works for around the house. I know you don't have time to sew but really all you'd need to do is the ends so they don't fray (frey?).

It may take a few times to learn how to do the different carries but that was part of the fun! I don't see the carry I used for the front but I could have A take some pics next week if you'd like. Actually...I might know where there are some pics on-line. I'll get back to ya.

xoxox,
Shannon


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## FillingMyQuiver (Jul 20, 2004)

Oh mama,







and







: for your family in this trying time. May you have a watchful hand on your family and may you find peace in your situation. I agree with pp about the wrap, but make sure you get a woven fabric (like an Ellaroo), not a real stretchy one. The woven fabric wil have minimal stretch, but as your son gets bigger, it will give you more support. Your family is in my daily prayers.


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## jackson's mama (Apr 27, 2003)

Thank you so much for all the support, mamas. I thought I'd give you all an update on Jackson's progress since you have been so loving and helpful to us, and it is due in part to your prayers that I have hopeful news to share.

We received Jackson's confirmed diagnosis yesterday. He has a disease called Krabbe's Leukodystrophy. This disease is normally terminal. The only treatment option is a stem cell transplant, which can stop the progression of the disease if obtained early enough. We will be flying to Duke in North Carolina for an evaluation to see if Jackson is a good candidate for this therapy. If he is a candidate, we will be there for 4 to 6 months while he undergoes this scary but potentially life-saving treatment.

Please keep Jackson in your prayers. I may not need special carriers if all goes well, he may be able to walk like a normal little boy







The link in my sig is to his website, feel free to keep up with us there as I am keeping a journal of events on the site.

Peace and blessings to you all,
D'Anne


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## veganmamma (Sep 10, 2002)

D'Anne, I would love to get together this week to play slings and hang out. I need a day or two to wash my slings up nice for you. My heart has been so heavy today, I'm glad there is some treatment to look forward to. With your permission I will tel our friends and family his story so that they may all pray for him/ send positive energy etc., in their own way. It is all I feel like I can do. I hope to see you soon and give you a big hug.


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## crunchymamatobe (Jul 8, 2004)




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## josiesutcliffe (Jun 26, 2004)

Quote:


Originally Posted by *jackson's mama*
We will be flying to Duke in North Carolina for an evaluation to see if Jackson is a good candidate for this therapy. If he is a candidate, we will be there for 4 to 6 months while he undergoes this scary but potentially life-saving treatment.

Hi, I know I haven't replied to this thread before but I noticed your mention of Duke. Duke Children's Hospital is great. I have a friend who works in administration there and she's heard so many success stories. I live in Durham, so if there's any help you need while you're there, please PM me.

Joanna


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## liam's mom (Jun 18, 2003)




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## beanma (Jan 6, 2002)

D'Anne, i'm in chapel hill just a hop skip and a jump away from duke. please PM me if you need anything. duke's children's hospital is very nice. hope the stem cell transplant is your miracle. keeping you in my thoughts.

p.s. we did donate our dd's cord blood.


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