A.S. Face 0555: Maddy

Maddy is five years old and was diagnosed with AS in June 2012. Maddy’s mother has Ankylosing Spondylitis and when Maddy continually complained of pain in her knees, legs, back, and neck she asked her pediatrician if it could be likely that Maddy had AS as well. Maddy had the blood test and it came back positive for the HLA B27 gene. She will be going to see a pediatric rheumatologist in October. So far she has been taking tylenol and switching off and on between that and motrin. Her pain is becoming more frequent and painful the last few weeks. She has also begun complaining of not seeing well, and headaches.

As her mother, I  feel so bad that my daughter has inherited my horrible illness, but with me by her side offerring support and being her advocate, I will be sure she receives the best possible care.

Maddy and Her mother

Maine United States of America

18 Responses to “A.S. Face 0555: Maddy”

  1. Dear Maddy,
    Thank you so much for sharing your story with us. We are working hard to raise awareness for all of you.
    Sincerely Cookie

  2. Dear Maddy, I was your age with A.S. many years ago. Back when I was a little boy A.S. was’nt known. Your a beautiful little girl and your Mom,will be your bes advocate for you. Your kinda of luky that your Mom, and Family understand your pain. With Positve thinking and so many of us praying for you there will be a day soon that you will be able to save. I’ve Kicked A.S. Your going to be ok.:) nice to see you on our wall your not alone,stand tall.
    Best wishes,Jonathan Thurlow

  3. All the best to you both… Maddy’s mother – there’s nothing you could have done to stop Maddy getting AS, so don’t be down on yourself… you can show her how to be positive during the tough times (and there are lots of those, I know…).. I have 5 children and my 3rd, in particular, is always complaining of pain in her heels and legs… I’m worried about her and might get her checked out soon… thinking of you!

  4. Hello Maddy you are a beautiful brave little girl. So sorry you have A.S but you are lucky in one way that your mum as the same condition and understand what you are going though and your mum and dad are their to give you strengthby loving you so so much.By the time your a little older we hope we have a cure for A.S so no other little one has to go though this and no mum and dad hve to see their child in pain.Maddy with your bravery and determination I can see you will be able to do everything you wish to do in life .<3 gentle hugs ❤

  5. Prayers going out to both of you! I am so sorry that your beautiful little girl must endure the pain of this illness but just know that you are not alone and she is not alone……………….

  6. So young to have AS, but so strong !!

  7. So young and definitely a cutie. It takes a lot of courage to deal with AS–and it seems M and you both have courage. Hang in there.

  8. Maddy and Mom: Welcome to our group! I wish you both all the best!
    Stephania #445

  9. Oh precious Maddy, I am terribly sorry that you are having to deal with this pain at such a young age. I hope that your upcoming appt in October provides you with some treatment to help lessen your symptoms. It is difficult dealing with this disease at any age, but the thought of a child having to go through this…it’s one of my worst fears for my own children.

  10. Maddy’s parents – thank you for posting her story! The day after her story was posted, my own 5 year old was tested for the gene. He has had joint pain off and on for 4 months plus lots of stomach aches. I was diagnosed in January 2011 and have the gene. My grandfather has it as well, and I’m 100% sure my sister and aunt (they refuse to be tested nor see a rheumatologist). Did you have your other children tested? My pediatrician wants my 7 year old daughter tested as well (I have 2 kids) in order to minimize any risks. My daughter does not show any symptoms, but the pediatrician wants her on a very healthy diet plus lots of exercise if she comes back positive with the gene. The doctor considers the gene to be dominant since so there are 4 of us in my family with it, and she would be surprised if both of my children DO NOT have the gene. That’s not what I wanted to hear from her! I hope things quickly improve for your daugher!

  11. I feel so bad for Maddy. She looks so sweet and innocent. I have 3 girls and am worried that they might have inherited my AS. How do you distinguish between normal growing pains, sports/track injuries and AS pain? When to take them to a rheumy? Best wishes for Maddy!

  12. Keeping you, Maddy and your family in our thoughts and prayers! It will get better once you know exactly what is going on, and find the correct treatment. You are such a brave little girl!! And you have an amazing mom who knows what you are going through and will make sure you get the best treatment & the right medicine to help.

    Please let us at SAA know if we can help in any way. Whether information, answering questions, or a ped rheum recommendation ~ glad to offer whatever support we can. Please don’t hesitate to contact me if I can offer any help.

    Thank you for sharing your story with us all! And Maddy, we all will be thinking of you and hoping it hurts less and less every day!

    Spondylitis Association of America

  13. Dear Maddy’s Mom – hang in there – I know how hard it is to watch your little one hurt – I do not know if it could be of help to Maddy, as everyone’s AS progresses differently, but I would be remiss if I did not share – my 3.5 year old was diagnosed in June 2012 (I have AS as well) – we have gotten him off all dairy and gluten and have him taking a probiotic and fish oil supplement – it has really helped him so far. His pediatric rheum has noted the significant improvement. Again, it may not help Maddy, but just wanted to put that out there. Take care!

  14. I feel for her, she is so young ,but on a positive side its good that she was diagnosed so early before her symptoms would have gotten bad shape. And I am sure when she will be a grown up girl she will be much more stronger and more confident than others of her age, because she has started learning her great lessons of life at such young. I hope Maddy is getting full support from her mother….’care’ does miracles happen…Wish you both all the best, and stay strong!

  15. I have a 7-year-old daughter and she had DAILY headaches, joint pain, and back pain at times. We took her to every specialist in the city and they were all baffled…..I, like you, insisted on a rheumatologist evaluation and he did not take blood but evaluated her and dismissed arthritis as having any contribution to her problems. Eventually we saw an ENT and she apparently had 10 “touch points” between her swelled sinuses and her septum and now does nasal washes, which has stopped the daily headaches. However, she has had GI issues since birth (including a significant amount of blood in the stool) and other problems, but the specialist dismiss it for now. I think you are a strong woman to stand up to these doctors; I have had nothing but dismissiveness, and while I am happy she does not have AS; I think they could have been much more open about the possibility (they kept saying to come back when she is an adolescent). Thanks for sharing.

  16. My son Brian also has AS. He is now 31 yrs old, but started with pain in his back when he was 18 and not one doctor could explain. He asked for a back xray and then it was found. He is such a wonderful man and a great son. No matter what kind of day he is having he stays up beat and tries to make everyone around him the same.

  17. Oh precious child, what a brave little girl you are. To Maddy.s mommy please give her a gentle hug and kiss from her world wide extended family who all know her and your pain. Both my sons have the gene, but the oldest who is 35, had a severe flare up of sacroiliitis when he was 15 and 20 years later has had no other episodes of anything but minor aches. My other son 32 years old has already some fusing but doing well on humira and I at 53 am due to start on simponi in 2 weeks. This disease has many faces and its course is unpredictable. In this beautiful child I see a great response to treatment. Sending you both oodles of support all the way from Melbourne australia.

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