Welcome to our lil’ Ella Jo’s Journey.


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Dear Reader.   Please consider a financial donation to this family right now.  Funds are needed for a multiple list of issues, to say the least of those being simple everyday living expenses.  It also includes legal issues.   Or, perhaps there is something that could be sold on E-Bay, or Craigslist that you no longer need and those funds could go towards helping this family out.  Or, maybe you have an idea for a fundraiser?   Please know that when you give, you Bless and are Blessed. 

 This is no ordinary family experiencing the wrongful removal of their child.  This is a precious RETTS Angel in dire need of her family.  EllaJo’s physical, mental and spiritual health are at risk.  Please, whatever you can do will be hugely appreciated.  Gratitudes and Thanks!

  Definition of a Friend:  

A person with whom one is allied in a struggle or cause; a comrade.

It only takes one Turtle.

 Please take a moment to watch this wonderful video above. 

Just click on Turtle. 


Update:  Monday, October 24th, 2011    Ella released from hospital and back to the same foster home.

Update:  Wednesday, October 26th, 2011     Ella now has PNEUMONIA!   Please pray for her!








 Loving EllaJo      You And Me Against The World        When I Cry        My Heart


 Ella Jo’s Story


September 22, 2011
     Please hear my heart, I’m Maternal Grandmother of a beautiful 3-yr old Rett ‘Silent Angel’ baby girl.   MY FAMILY IS DESPERATELY REACHING OUT FOR HELP!  Our Angel has been taken by the State,  they believe she has been abused…. SHE HAS NOT!  Sadly they are not educated about a Rett Angel or Precocious Puberty!  All close family members have been extensively investigated  and Polygraph/Voice Stress tests have been performed, with all  passing.   The detectives investigating our case, sees the loving family we are, and sees how very fragile our Angel is.    Ella’s 2 other siblings in the home have also been put into foster care, under ‘Protective custody’.   
        Our Rett Angel is not a typical Rett Girl in that she suffers from very severe seizures that stops her from breathing and she turns  ‘code blue’.   She also has ‘Rett seizures’ from fright.   She suffers from very severe hypotonia:  “Hypotonia is a state of low muscle tone often involving reduced muscle strength.  Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength.”  Ella Jo is in Precocious Puberty also.
      Ella Jo’s history of accidental & pathological fractures started when she was 1-year old.  Ella Jo is not able to assimilate the nutrients in her food, therefore has a weaken bone structure.   The seizure medicine that Ella Jo had been on for half her life also deteriorates bone mass!  The doctors failed to suggest Ella Jo needed Vitamin D & Calcium supplements to prevent this!     Click to read:  Osteoporosis in Retts children  is only one of many tragic complications that comes with this disease.   At the age of 1-year,  a family member fell with Ella Jo, clutching her tightly on slippery ceramic tile and accidentally broke her femur.  This is indicative of her condition, (see all the moms emails that has had fractures with their children!) as it is with some Retts children — and it is indeed, an exasperating continuous DAILY learning period for every Rett parent when helping your child deal with Retts Syndrome. One break came from an in home PT worker doing pressure therapy on her arm.   As a result of her last incident during a bath, Ella  Jo slipped out of loving hands and that placed her in the hospital with a Halo.  
        And, as a result of that accident, and false accusations made by the hospital they notified the State authorities, and subsequently placing Ella Jo (& her sister and Dusty’s daughter also) into the foster care system.  This occurred due to institutions, facilities and doctors/nurses/staff not fully understanding the dynamics of Retts Syndrome OR PRECOCIOUS PUBERTY.  The TRAUMA that has created for the entire family and  Ella Jo is unbelievable!
What we, as a whole family know is that Ella Jo has never been around anyone that would have intentionally or knowingly harmed her in any way.   These outlandish accusations only add to the complicated issues surrounding Ella Jo’s health issues with Retts and is indicative to this illness.  To make such accusations, merely shows their inadequacies of a medical evaluation AND TREATMENT, in my opinion.
      We are seeking the assistance of experts in the legal fields, in advocacy, in nursing, in doctor’s care … all in an effort to help us with our battle to get our baby back into her home where she rightfully belongs.  Ella  Jo’s  older sister, Tyler & Dusty’s daughter Bree, have also been removed from the home.  With any suspect of a child being harmed, ALL children are removed.  There is no one that knows how to take care of Ella Jo’s daily needs other than her Mother, and her family.  There have been times the  hospitals have asked us for help and advice on managing Ella Jo.   We have TRIED to educate the Foster Lady on how to manage Ella Jo, and that is minimal at best.  Ella Jo requires a lot of care and familiarity with those she is most in tune with.  We know her every move and sound,  and I know her Mommy has eyes in the back of her head and ears like an elephant!   Over a dozen times, her Mommy & Dusty have brought Ella Jo back to life with rescue breaths after severe seizures.
      Ella  Jo, our “Silent Angel”, cannot communicate verbally like a normal child.  She  ” eye-gazes” with us and us only — as we are her foundation and can react accordingly.   Now, she is in an environment where everyone is second-guessing these actions.  Ella Jo over reacts to feelings of fear, strangeness and anything out of her comfort zone … she can not handle, and goes into a “Rett type of fear seizure.”    We are acutely concerned with the foster home being 70+ miles from Ella  Jo’s hospital.
       The last time Kylie visited Ella Jo in the hospital, for the allowed 1 hour supervised visit,  my daughter thought she needed to explain to her daughter why she has not been there for the normal 24/7 stays she was doing.  Kylie told Ella  Jo:  “You will be getting  out of the hospital soon… I want you to be Mommy’s big strong girl…. you will be going to another house, not ours and they are a nice family.  I want you to know that Mommy is at home fighting bad people to get you back and will never stop fighting for you.  You will be home soon.  Remember Mommy always loves you and our hearts are connected.”   My daughter started to cry, kissed her baby and left her room.  She forgot something, went back into Ella  Jo’s room and found our Silent Angel …. for the first time …. with tears rolling down her lil’ cheeks.   My daughter’s heart was broken seeing her baby respond like this.  Our baby girl totally understood all of  her mommy’s words.   Feeling completely overwhelmed, my daughter went to the nurse station and asked them to please read a book to Ella  Jo, as her baby was crying.
      Our Silent Angel Ella Jo went from having dedicated, loving, committed and attentive family members surrounding her life  24/7 to only being allowed a 1-hour supervised visitation per week from her Mother.   Can you imagine how this 3- year old’s is wondering where her family is?   Not being able to assimilate the disappearance of everything familiar to her and being thrown into an environment completely foreign?  She cannot comprehend why her family is not around.   She cannot ask those questions.  We must find answers for her, and therein lies our battle.
       It doesn’t take much processing to understand that this is EMOTIONAL ABUSE TO A CHILD perpetrated by the hospital and states’ agencies mis-management!  Not all cases should be handled ‘by the book’! The state social worker told my daughter that “special needs children get 4 hrs a week with their mother”, yet Ella Jo still only gets the 1 hour per week.
       This is a very special needs child, a silent Rett Angel — and she belongs home with her family!
      Please do not even forget what the other two girls are going through.  They are with family members, but not allowed to see their Mom or Dad other than 1 hour a week.  Tyler has not been able to see EllaJo for 3 weeks now.  Her first visit will be this Friday!  Grandparents have been denied visitation for now 3 1/2 weeks, as I am told there simply is not enough staff by this State Agency to make a supervised visitation possible.
      Please hear our pleas for help to assist in correcting this horrific wrong in Ella  Jo’s and our family’s life.
      We are needing funds for legal support, and the general maintenance of dealing with this life crisis.  Please if you can, donate using the PayPal button on the right column, and anything you contribute will be forever appreciated.
Thank you,  Ol’ GrandmaBear Patti… I WILL protect my cubs.



 Click This Angel Below to Read the Personal Testimonies of other RETT Mother’s and their children.
A Sister’s Love
Letter to Ella  Jo from Tyler

// ]]>

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57 Comments (+add yours?)

  1. Judy Friesner
    Oct 23, 2011 @ 21:39:37

    just checking in and letting you know that still thinking of you all and sending prayers up for your girls


  2. Stephanie Swearingen
    Oct 15, 2011 @ 17:25:04

    My name is Stephanie Swearingen (Shuck) Norma is my Great Aunt! I want to let you know we are praying for you guys. My heart breaks for you. If there is anything we can do please let us know. We will be spreading the word and asking for prayers.


    • Admin
      Oct 18, 2011 @ 09:16:27

      Stephanie and EVERYONE thank you for your thoughts, there will be a time VERY SOON we need to organize and you all will have a job if you really choose to stand and fight with us…Stand by!


  3. Gloria Bawroski Grimm
    Oct 15, 2011 @ 13:36:24

    Just checking updates and still praying.


  4. BoBeannie
    Oct 14, 2011 @ 11:39:36

    Well today is the BIG day…..the day in court. I am hoping and praying that these girls will FINALLY be able to go back HOME to their MOTHER, not to some stranger’s house. The people making these decisions “should” be considering what’s in the BEST INTEREST OF THE CHILDREN and not their “own” agendas!! I am continuing to pray that the children will be reunited with their MOTHER and each other, and that the hospital staff will FINALLY start treating Kylie and Patti with RESPECT. GOD help them!!


  5. Admin
    Oct 13, 2011 @ 20:49:43

    Please UNITE with us at 12:30 tomorrow, we all come together in prayer on the court house grounds. Please join us in your thoughts and prayers where ever you are, with whomever you are with…. so all the loving prayers and thoughts arrive to our Father at the same time…I know our prayers will being heard… God bless our family and our babies that are suffereing….please bring them home to us.


  6. Kim Barnes
    Oct 13, 2011 @ 18:57:28

    You all will be thought of tomorrow by everyone from all around the US. I can’t wait until we all get that text, call or email saying that you are on your way to bring home your babies!


  7. Kim Barnes
    Oct 13, 2011 @ 18:55:06

    GO ELLA JO!!!!!!! You keep fighting like we all know that you can. You are such an inspiration to all of us and have taught us all so many things and the biggest of them all…NEVER TAKE ANYTHING FOR GRANTED IN THIS WORLD. We are all thinking of you each and everyday.
    Kylie and Dusty~ Keep up the strong faith and understanding for all in Ella’s care. Unfortunately sometimes we all know that no matter what we feel in our hearts we have to go by the rules and laws whether we like them or not. I know you guys are doig everything that you can and more.
    Bree Bree and Ty~ Keep being strong girls and keep praying. I know that it won’t be long and you will be able to be back at home with your mom and dad and Ella Jo.


  8. Sue Zentner
    Oct 13, 2011 @ 18:02:41

    Dusty, have been and will continue to pray you all through this. I know you will be nervous tomorrow, but know that everyone believes in you and is supporting you. Pray before you go into court, everyone else will be lifting you up in prayers to. Because of the internet you have prayers coming from Las Vegas, Wyoiming, Kansas City and many more places. You are a good, wonderful nephew with such a caring heart who is loved by so many.


  9. Staci Allen
    Oct 13, 2011 @ 17:58:12

    I am dusty’s cousin and this is the first I have heard of this. Poor baby girl. I will keep her and all of you in my prayers!


  10. Jill Foltz
    Oct 13, 2011 @ 17:18:17

    Oh My Goodness!!!! Keep Believing in God, and that everything happens for a reason. Pete and I will pray for you and your family. I really disagree with the state being able to take away kids out of their homes on faulsifications on Child Abuse. Its really sad. Nothing that I say will take away your pain and worriness of your daughter, Ella Jo. She is one of Gods Silent Lil’ Angels. She is so precious. I cant even imagine being in your shoes right now. I feel your pain. I will pray for her everyday. No child or parent should have to go through this. It would break my heart to see my little girl go through this. You are being so strong Kylie and Dusty. KEEP PRAYING!!!! -God works in mysterious ways. God will not give you anything that you can not handle. If you guys need anything at all, dont hesitate to ask. Please remember that God will make everything right again and he wont let you down. Give Ella jo a hug for me and tell her that there are alot of people praying for her everyday. Keep fighting! Dont ever give up!! SHe will be home before you know it.

    Shes in our prayers!!

    Jill and Pete Foltz


  11. Gloria Bawroski Grimm
    Oct 13, 2011 @ 16:56:10

    I’ve worked in the special education system over 30 years. I have an autistic child. I know the accidents that can and do happen but they are accidents. I also know there are many children that are abused because of their disabilities. I know
    Dusty and Kylie are not abusers. I know that they love their children and this injustice is killing their spirit. The people at social services need to admitt they made a mistake and give back our children. Kids hang tough your family in wyoming loves you all.


  12. Leon Grimm
    Oct 13, 2011 @ 16:48:12

    Wish we were there to add support tomorrow…we will be praying everyday until Tyler…Bree..and EllaJo are back in their parents arms and our family is whole again. Social Services is committing a huge injustice here. Dusty has always been a wonderful father any child would be lucky to have him as dad.


  13. SunOf TheBeach
    Oct 13, 2011 @ 10:58:37

    If there is anything that I can do PLEASE let me know. I can make Tshirts and hoodies to help raise funds for whatever Ella and the family may need. I will be more than happy to sell any fundraising merchandise you can come up with. Anything I can do I will! This is just too heartbreaking. Our families have been friends since Dusty and I were kids and I just can’t imagine something like this happening to such wonderful people.

    That being said, I am a firm believer in positive actions receiving positive re-actions. All these positive thoughts, words and prayers WILL result in a positive ending. Keep your heads up!

    ~Janon Gordon


  14. BoBeannie
    Oct 13, 2011 @ 10:22:31

    Loving Father….I come to You this morning on behalf of Patti and her family. They need a MIRACLE!! Lord, I know You have been listening to the prayers of Patti, her family, and her friends. You are making them all stronger, and You are healing Ella. Surround them with Your Angels. Protect them from those that have wrong motives and evil intentions. I ask that You reach into the hearts of all the decision makers and soften their hearts with Your compassion. Help them to clearly see that Ella and her sister Tyler, BELONG with their MOTHER!! Restore this family, Dear Lord. Strengthen Kylie is a major way. Open her eyes to making sound decisions for herself and her family.” May the TRUTH be revealed tomorrow!! In Jesus’ name. AMEN


  15. Judy Friesner
    Oct 11, 2011 @ 21:08:29

    Ella Jo you go girl. Show them how strong you are.
    To everyone else Ella Jo is fighting hard cause she knows her mommy loves her and wants her home.


  16. Judy Friesner
    Oct 11, 2011 @ 21:07:06

    Praise the Lord.

    Hopefully Friday these beautiful children will be home with their beautiful wonderful mom. Just look at the family pictures not way would the love shown for these girls just be for the pictures these are much love and well care for girls.


  17. ellajoandgrandmabearpatti
    Oct 11, 2011 @ 20:48:58

    Thank you all for your thoughts for Ella Jo…tonight could be a tough night for her…COME ON BABY GIRL!!!


  18. Leon Grimm
    Oct 11, 2011 @ 20:10:57

    God has blessed us….for this I will rejoice and give thanks…..But I will continue with prayers until the home issue is resolved…We can be there in 12 hrs if we are needed. Love, prayers and kisses form


    • ellajoandgrandmabearpatti
      Oct 12, 2011 @ 19:31:15

      Leon, You are so kind to offer for that long drive! God bless you and yours! Huggies


    Oct 11, 2011 @ 20:06:34

    just read the good news and told Dad and Glo…we will all be praying until this is resolved.


  20. Dowser
    Oct 11, 2011 @ 18:34:00

    Way to go precious flowet
    I knew you would fo it
    Now lets get you home

    By all that is sacred and supprts us let us bring the light of love and justice to fruition


  21. Carmen Torbus
    Oct 11, 2011 @ 18:17:07

    Thinking of you and your family Kylie.

    much love and prayers,


  22. Sandy Berry
    Oct 11, 2011 @ 14:15:08

    We are all praying for you guys! Kylie and Dusty are amazing parents and would do anything for any one of their children. I am proud to call them family.


  23. Casie Rohde
    Oct 11, 2011 @ 13:51:26

    Patti, you are a wonderful grandma for doing this for Ella Jo. Ella is so lucky to have a loving Mother, and loving family! She could not have been blessed more than she already is. I pray all this works out, and Ella is home with Kylie where she belongs❤ My thoughts and prayers are with all of you! LOVE YOU!


  24. Kelly and Mike Kane
    Oct 11, 2011 @ 16:56:58

    I will be praying. I can’t imagine the emotional pain you are feeling. I know my family and if abuse was suspected my cousin Debbie would be the first to step in. God please hear our prayers.


  25. Judy Friesner
    Oct 11, 2011 @ 16:54:48

    Still praying for you all. This is so bad why would they do this to a family that so much loves their children. Praying that the tube can come out safely today.


  26. Gloria and Leon
    Oct 11, 2011 @ 16:39:30

    The entire Grimm family in Wyoming will be praying at 12 noon your time. Dusty and Kylie you have all been in our prayers daily but today we will be a louder voice today. We willl all be praying at the same time. We send love to you all.


  27. Janeen Bailey
    Oct 11, 2011 @ 15:53:14

    It is hard to believe that something like this can happen to people like you–just goes to show that it doesn’t take FACTS for something like this to happen–it just takes accusations. Be strong Kylie, Dusty, Patti, Ty and everyone else that is there for Ella Jo and has ALWAYS been there for Ella Jo. Fight hard Ella Jo! I hear the tubes are coming out today–you will have to start breathing on your own again. FIGHT HARD because one day soon, we all know you will be HOME with your momma again!


  28. Willie Broaden Capt Liger
    Oct 11, 2011 @ 15:41:48

    God loves little givers…Ella, is a beautiful spirit with a big smile…I will indeed pray for you…Ella, Mom and Dad too!!! Of course grandma Patti and all the family..We love you…Get Well Soon!!!


  29. Kristi Brown
    Oct 11, 2011 @ 14:36:41

    Thank You for keeping everyone informed and updated. Kylie and her daughters have been in my prayers for a long time. Kylie’s strength always amazes me and she has passed it on to her daughters. God has given Kylie a powerful voice to not only speak for her Silent Angel but to help others in the fight.


  30. Mindy
    Oct 11, 2011 @ 04:32:12

    I know you don’t know me, I am a friend of Sue Zentner’s. I have to admit, I couldn’t make it thru the whole story – It simply broke my heart. As the tears are running down my face, please know that my prayers are with you and your family. I have asked my church to start power praying for your family. Please stay strong and stay in faith…. You are the strongest MOTHER AND FATHER I know……


  31. Sue Zentner
    Oct 10, 2011 @ 22:40:13

    Hopefully God continues to hear everyone’s prayers that have been lifted up on the families behalf. And that NO charges will be made, and they get the kids back into their home! And this will prove, the only thing Dusty is guilty of, is loving Ella & Ty the same as he does Bree as daughters.
    If anyone seen has seen Dusty take care of Ella, it is amazing. So much care & compasion, so much love. At our family get togethers, how he would wake her from her nap, hold her, feed her, talk to her and hoping she was hearing and understanding all he was telling her.
    Dusty, as an aunt, and I speak for the rest of our family, we couldn’t be prouder of the man and father you have become. Love you so much.


  32. Changing Kansas
    Oct 09, 2011 @ 23:57:34

    Kansas has a history of taking children from good families on falsified records.
    I hope you get your granddaughter back soon! Keep up the fight!


    • ellajoandgrandmabearpatti
      Oct 10, 2011 @ 21:12:44

      Changing Kansas……thank you for your work and fighting for these angels. I understand Kansas is #1 in the country for taking children out of their homes…


  33. Debbie Welsh
    Oct 09, 2011 @ 21:05:57

    I have been thinking about all of you today. I so wish that we could go see Ella but we are not allowed to. Dustys’ heart is broke he would love to be there for Ella and Kylie. Why can’t CHM understand? This is so heartbreaking. Don’t give up Ella we are praying for you.


    • ellajoandgrandmabearpatti
      Oct 10, 2011 @ 21:15:46

      Debbie, I know how hard this is on Dusty, its clearly shows on his face…I’m praying we will have a fair day in court…and the ‘judgment’ has not already been predetermined….


  34. ellajoandgrandmabearpatti
    Oct 09, 2011 @ 04:28:08

    This is a Mothers and Grandmothers worse nightmare….thank you all for your kind thoughts and prayers….


  35. Sue Zentner
    Oct 06, 2011 @ 20:34:46

    Every moment, every day Lord, we still feel the heaviness in our hearts. Hopefully soon,this cloud will be lifted from the families and friends hearts who care. I know we need to remember, although waters may surround us with the troubles of life, “We must walk by faith, not by sight”, a higher power is always with us, during the good and bad times in our lives. Even though we cannot see him, he is here.
    Lord, let us feel your presence working for us, and we pray for you to give us a sign of encourgement.


  36. Karen Gee
    Oct 06, 2011 @ 16:02:30

    What an extremely sad story! It brought tears to my eyes thinking if my Rett child was taken away. I think it is every Rett mom’s nightmare–someone that does not understand how fragile the girls are. I fight that battle of misunderstanding quite often, but luckily not to the extent you have. It is undue stress on everyone that is just unimaginable. I say our girls bring out the best and worst in mankind.
    I pray that soon that someday soon, everyone will be united and you will see the other side of mankind.


  37. Tina Wolken
    Oct 05, 2011 @ 17:31:31

    I am so sorry that your family is going through this, Ella and you all are in my thoughts and prayers. I pray that they will be reunited soon.. My God Bless you all!!

    Tina Wolken


  38. Sue Zentner
    Oct 05, 2011 @ 16:46:33

    Our hearts are so sad right now. I know it says we walk by faith, not by sight. That is sometimes hard to do when you see the system failing. There has to be a reason this is all happening. We all have to pray without ceasing and be specific on what our requests are, and he will listen. Although it may seem like he isn’t listening, he knows all. And we have to remember, he will answer prayers in his time not ours. All we can do is surround the family lift them up in our prayers. And just love each other.


  39. Tiffany
    Oct 05, 2011 @ 16:09:21

    I am blown away at the states way of handling this!!!! Its that lack of knowledge, that outsiders don’t have, and who pays the price for it???!!!! THE CHILD!! THESE CHILDREN ARE PEOPLE!! They are not to be the ones to pay a price, IF THERE IS NO ACTUAL proven evidence, how can they remove the child for this long, and NOW SHE IS RESPIRATORY failure!!!! What is going on???? Was she NOT doing well before all this happened? What is happening to her? Has she given up, from the state keeping her family away!!!??? Doesn’t the state have REAL criminals to attend to???? I’m sick over this…literally sick!! As a parent of a RS child….I KNOW that by touching them they can bruise, and or you bump them they bruise… my daughter is like this! O’ my heart breaks for everyone involved…I’m so sorry…. May God show his Mercy to this family and child, May God heal this little girl NOW! Jesus name Amen.


  40. Tanya Lewis
    Oct 05, 2011 @ 14:47:20

    Please stay strong for Ella Jo, we are praying for her!


  41. Debbie Welsh
    Oct 05, 2011 @ 12:28:35

    Several more days of heartache and tears, When will this end? ENOUGH IS ENOUGH! Still cant understand why they are doing this to us. Guess we will continue to keep praying. We dont sleep anymore so guess we need something to do. Hang in there guys hopefully this will be over soon.


  42. BoBeannie
    Oct 01, 2011 @ 19:17:09

    Patti, I am praying that God is working this all out for the good of your family. It is such a tragedy and it hurts deeply for all of you, but perhaps your family will draw closer together and to Him for your strength. I believe that justice will ultimately prevail and that the family will be reunited! God bless you and your family, Patti. (((HUGS))) from BoBeannie!!


  43. ellajoandgrandmabearpatti
    Sep 30, 2011 @ 03:03:25

    TOMORROW my first visit with Ella Jo in 5 weeks!!! I’m going with Kylie…..yeahh!!! Kisses from Grandma!!!!!! Move over MOMMY!!!!


  44. Kristie Reitinger
    Sep 30, 2011 @ 00:31:19

    Wonderfully put Patti! As I sit here reading this with tears streaming down my face my heart hurts for all of you! Ella Jo, Tyler, and Bree are so lucky to have parents like Dusty and Kylie and grandparents like you and Debbie and Lester. I wish everyone could see the best place for these kids is at home with their loving and caring family. No one could possibly take care of them better or love them more! They say that everything happens for a reason, and I used to believe that until now. There is absolutely no reason that this should be happening! I pray everyday for the kids to get to come home where they should be and that Kylie and Dusty wouldn’t have to go through this anymore and I will continue to pray until that happens. Love to you all!


    • ellajoandgrandmabearpatti
      Sep 30, 2011 @ 00:51:23

      Thanks Kristie for the heart felt comment….Ella is in God’s plan and hands.


    • ellajoandgrandmabearpatti
      Sep 30, 2011 @ 02:57:57

      Kristie, Kylie and I talked about this…just maybe we are here to educate others with this experience…maybe this will help other Rett parents….maybe educate the ‘System’…maybe the community….if WE don’t make a difference SOMEHOW, then all this suffering will be in vain…Soooo lets make the lemons into LEMONADE!!!


      • Kristie Reitinger
        Sep 30, 2011 @ 03:03:19

        You are absolutely right, that has to be the reason. What a great way to look at it! I am so proud of you guys for being strong and dealing with anything that is thrown your way, I believe in you all and have no doiubt that you will make a difference!

  45. Debbie Welsh (Dustys mom)
    Sep 29, 2011 @ 01:12:16



  46. Judy
    Sep 22, 2011 @ 10:32:09

    Awesome Blog ! Informative and provides outstanding life experiences and educational links for awareness of this chronic condition and its challenges for the child and family. May it serve to remove the ignorance of those ‘outsiders’ who would sit in condemnation and judgement.


    • ellajoandgrandmabearpatti
      Sep 30, 2011 @ 03:04:53

      Judy, thank you so much for bringing this special lady, “Dar” into Ella’s and our lives and putting this together for us! She has been a GodSend!


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