Profiling SMARD: Maddison’s Story

Maddison was born  6.8.08 a healthy 7lb130z.  She was born with club foot but we was told its postional so a few times a phsiyo she should be fine.  After a few visits to the phsiyo we noticed the movement in her feet had stopped.  She was referred to a pediatritian, they weren’t worried, just said they would see her in 6 months.
When maddison was 6 months old she fell ill and was takern to hospital where they said she had pnemoinia ,she had a week of antibiotics and and was sent home after 2 weeks in hospital, while at home her feeding was poor and she seemed to struggle breathing also she would not bare any weight on her legs.  3 weeks after the time she was sent home from hospital we were back again.  This was the 16th feb 2009.  A and E the docs noticed her breathing pattern was not quite right, and admitted her to the wards, a day later maddison got alot worse and was taken up to intensive care unit, there they did a xray and noticed the her right side of her diphragm was high, and her lung had collasped.  With the other sypmtoms that I had told the e.g no movement of feet, no weight bareing, tiny cry and now poor feeding, they got a neuro team to look at her.  And thats when all the test started.  Endless test.  But while all these test was being done the docs on picu thought it may be congenatal her diphragm and choose to opperate to pull it down and tighten it to enable her lung to re open, and it did, maddison was taken back to the normal ward on only oxygen and  a ng feeding tube.
 
On the ward they couldnt get maddison off oxygen so she remaind in hospital ofr a further 10 weeks in this time she had endless chest infections and was incubated up to 4 times.
At this point maddiosn would be about 8 months and is now on non invasive venilation, a nerve conduction showed there was a neuro problem, and was sent for a mucsul biopsiy,which also said there was a problem too.  So with all these test dr chow started piecing all her symptoms togther, foot deformaties, weak cry, weak cough, sweating, high heart rate, poor feeding, on going breathing problems and low muscul tone.  On the 20th may 2009 the diagnosis was back, our worse fear SMARD1 positive.  We were in compleate shock and felt nothing but sadness at this point, every we had read was so so bad and as good as said she would be compleatly paralyzed and being only alive beacuse of machiens, and NO QUALITY OF LIFE was used alot.  A week after the dignososis maddison fell ill again and was put back in picu back on the vent,this time was different, this time we new she might not come off.  After a week on the vent and a unsucessfull extubation, they gave us the talk at 2oclock in moring, heres how it went”you have some big decisions to make, you must think of maddison and her quilty of life “wll she become a burden” me and jamie(her dad)said im sorry but shes our daughter she will never be a burden, and there is no decision to make,shes going no where, we new this meant maddison needing  a trachostomy and 24/7 ventilation.  That  night we promised our baby girl she will have a brillent quilty of life and all the love and effection her brothers and sisters get, she would want foe nothing.
with this promise we needed extra money,so we did some fundraiseing and raied 20,000 pound before she evern came out of hospital.  At this point maddison had been in hospital 4 months and we never left her.  Also when she had her trachy maddison had a g tube because they said she WILL loose her swallow.
So from june to december it was all training to look after maddison, includeing intence chest phisyo, alot of body development phisyo and basic life support. 
The hospital of nottingham queens medical center had never had any children with smard1 ever or any were to them,so they couldnt say what maddison furture held.
On the 19 december 2009 almost 11 months after we first takern he in hospital,we finally could take maddison home.just in time for christmas,which was our goal.
From then till now maddison as thrived, no more hospital, even when she as had chest infections she has beat it all by her self.  thanx to the cough assist we love it.
maddison as a big team of people that her.  9 in total, she has a carer sit up all night wacthing her as she needs 24 hour care.
maddison as 1 older sister lacey 9,healthy,harley 6,healthy and jayden 3,healthy.  maddison loves haveing older sileant so much from them.
As for the g tube maddison eats 3 meals a day, and has fluids throgh her g tube,shes a piggy.
maddison loves danceing , singing, makeing a mess, haveing a strope normall 2 year old things.she can talk sing and comuicate very well,aslo she can sign.
At the moment maddiosn can sit,roll,pull her self across the floor with her arms,get from sitting into lieing,eat,talk.  This is just for straters im sure she will be doing alot more next year lol.
We work very very hard with maddison development and its paying off,so fingers up to youve got smard you wont move or have a QUALITY OF LIFE.
maddison has been on loads of fair rides, a 16ft inflateable slide, padderling pool, tramperline, a bike, been on holiday and played on a beach.
All in all maddison is a true insperation and a soilder….
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5 Comments

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5 responses to “Profiling SMARD: Maddison’s Story

  1. hiya im maddisons mum,its 16th december 2010 and this week maddison as started trying time off her ventilater,something docs said will never ever do,well she as done 6 mins so far,which is brillent for her first try off..im a very proud mummy.xxx

  2. Alisha kent

    Thanks for sharing maddisons story! She is a true fighter like all smard kids! Love to them all!:)

  3. Alisha kent

    Thanks for sharing!:)) maddison is a little fighter just like all smard kids!:)) love to them all!!!

  4. Lisa

    Hi Lidia~

    WOW! I can’t believe the details of Maddison’s story, I’m so surprised to hear this. I’m truly taken aback from reading it. I just can’t believe that she went through SOOOOOOO much and the doctors told you such crazy non-sense (at 2am nonetheless) about having “big decision” to make. Because when I see Maddison’s picture and hear the reports about how amazingly well she is doing I never would have guessed that she had such a challenging path. I NEVER would have guessed that her diagnosis unveiled itself in that manner. Oh. My. Goodness!!!!

    I saw Maddison’s and Dakin’s pictures when I was in the hospital researching SMARD (when Silas was sick) and I truly didn’t even notice their trachs or that they had any kind of impairment because I was so mesmerized by their radiant smiles, which was so comforting to me. I had to look closer, several times, to see that they had trachs and were attached to vents.

    I love that Maddiso has been on a beach and in a pool, I love that she does the same exact things that any other 2 year old girl would do–AND SHE SIGNS! I was amazed and I still am… she is a wonder woman!

    XOXO~

    L

    • thank you so much for such lovely coments lisa.
      maddison is doing really well,but it as takern alot to get were she is today,she as been through so much but she is a very determaned little girl.
      as for how the doctors put it to us,we have never takern much notice on thier oppion of smard,as they have never ever evern seen a child with smard,i just hope now they have, that now they have seen what a good quilty of life is posable and the next time they have to tell the next family thier child as smard, they can say “well they can do well”
      as for not noticeing maddison had a trach,i dont think she nos that shes ill lol,she thinks she is just like her brothers and sister,because to me she is.. : ).

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