Mon 26 Feb 2007
22q11 Deletion Syndrome
Posted by Jane under Updates
[32] Comments
We were further devastated to learn this morning that Ramona has a chromosomal syndrome. Although what this will mean from her is unclear, it does carry with it some risks for immune system problems, mental retardation and palate abnormalities among other things. It is also possible that she would show no further symptoms beyond her heart defect.
Our plan to try and sustain her until the next surgery remains the same and it is unlikely that the effects of this syndrome on Ramona would be clear until later on. There is about a 10% chance that she inherited this syndrome from Andy or me and we are planning to be screened soon. If one of us does carry it, any future biological children would have a 50% chance of being born with it.
Right now it feels like the small channel of hope making it’s way to our hearts is slowing freezing over. I’m not sure what to pray for. Maybe that we will be strong enough to care for Ramona despite the moments of despair and hopelessness we feel. That the medical intervention and care that brought her into this world and has sustained her thus far is part of His plan for her. That we will be able to know the difference, if there is one, between our will and God’s will for her life.
Thank you for your love and support,
Jane.
32 Responses to “ 22q11 Deletion Syndrome ”
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[…] heart defect (which later turned out to be the result of a chromosomal abnormality called 22q11 Deletion Syndrome or DiGeorge Syndrome), Jon Boyd set up a blog for them. Via the web, their friends and family […]
praying right along with you, jane.
ps–hope you don’t mind that i’ve been posting brief updates on ramona on my blog. i figure the more people who can pray for her, the better.
We are praying for God’s loving arms to envelope you and to comfort you.
Dear God,
There are no words for the depth of love for this child.
We pray for her care and her protection.
We surrender her into Your hands.
Please, dear God, send Your angels to bless and surround her always.
May she be protected from the darkness of our times.
May she always see You at the center of her life.
May her heart grow STRONG,
To love You and serve You. This is our prayer for Ramona Mae, now and forever Lord.
Love you,
Dori
Oh, and BTW, Ramona is 3 months old today, a big girl…
Is it possible this is also known as DiGeorge Syndrome? We have friends here who have traveled this same path with their son who has DiGeorge Syndrome. All of it sounds so similar… Their son is now 2 and amazing to watch! Don’t lose hope! This family has been praying for you since surgery day – they are ones who can say “I’ve been where you are” and know how to pray.
{{{HUGS}}}
Yes, Whitney, the lay term for this is DiGeorge. I’d love to connect with your friends if possible. We’re looking for any support we can get in our current wilderness of worry.
Praying for miracles largege and small. lifting you up. Andy and Jane, the way looks dark, but there is always HOPE. Love Aunt Ro
I’ll get on that right away. Would you like to talk with them via phone or email? Send me an email at whitpete@aol.com and I will get you guys hooked up.
Hey Jane and Andy-
I’m praying for you and your wonderful kiddos. I really miss seeing you all. I am praying that God will bring you peace that passes understanding in these tumultuous times. May your understanding of who God is and how He provides for and comforts the ones He loves increase daily.
love you all-Kate
hello jane, i found this site through my “blog-surfing” and just wanted you to know that we are praying for ramona, you and your family. what a sweet little girl!
linnea and cam johnson
Andy and Jane,
I wish Toby and I were still there with you, to hold you and cry with you, and just be physically alongside you. Our hearts are breaking with yours, and hoping with yours. I love you both so much, little Simon and Ramona too.
Bekah
Jane and Andy,
Laura and I just recently heard about Ramona and this website. We want you to know that our thoughts and prayers will be with Ramona and the rest of your family everyday.
With love,
David, Laura and Sylvia Scott
Hi guys,
I’ve been following Ramona’s progress since it was posted on Ars Technica. I check the website daily and tell my 7mo all about Ramona’s progress.
You and the family are never far from my heart and always in my thoughts. I am incredibly excited that she will get to come home soon!!!
I know that the diagnosis of this syndrome is frightening, but I think it’s only a label that helps doctors understand what is happening. I know that a label won’t get this little girl to stop amazing us all. She is both a blessing and blessed.
Always in our prayers,
Christina
Jane and Andy,
You’ve been in my thoughts and prayers all weekend. With this recent update, I find myself crying out to God with you and hoping with you. I am continually amazed by both of you and your honesty, faith, commitment, and love for both of your beautiful children and for God. I feel so honored to be friends with you. And I can’t wait to get over my goofy cold so I can help you in person in whatver way I can. And yea, little Ramona gets to go home!
Love, Val
Happy 3 month birthday, Ramona – our sweet, precious, little girl. You are in our fervent and unceasing prayers. we wish we were there to bless and annoint you every day… you are under the protection and in the care of our Lord and Savior, Jesus. By His love, mercy and grace you are redeemed and made whole. We ask that you continue to be annointed with His healing power and made well. We ask these things of the one true God who authored the Creation of all things through His Word. We thank Him for the miracle of your conception and birth. We thank Him for the privilege of knowing you. AMEN.
We love you Ramona. We love your mom, dad and baby brother Simon.
PaPa & Grammie
Andy, Jane, and Simon, I am so sorry to hear the news. My family and I have been praying for Ramona and her disabilities. I hope that even with all these things holding her back, she will live, prosper, and be loved by all. Love, and the Marion’s cheering for Team Ramona! Keep fighting Ramona Mae we love you!
~*Emmalina*~
She may have a “syndrome,” but I can see in her sparkling eyes that she’s bright, strong, and a has a beautiful soul.
Love,
Karen
we are keeping watch and vigilant prayer with you all along this road; i’m afraid i’ve been remiss in commenting because my words feel so small. but — GOD IS BIG. and we continue to PRESS IN, asking for every big thing we want for ramona and for each of you. may His presence of Comfort be more real than the things you can even see today, and may he give you every single kind of manna you need for each moment. you are surrounded by a great cloud of witnesses, all of whom are standing with you, and hoping FOR you, even when it feels you cannot. Much love, laura (+ ben)
Happy 3 months Mona Mae! One day at a time, Jane. Focus on bringing that baby home to your cozy space and the rest will unfold. I’m sure there is lots to learn about her syndrome and people who have been there to help you. Syndrome or no, Ramona has already proven such tenacity, I’m sure she will continue to impress! Lots of love and hugs, m
Dear Ramona
I just got back from the grocery store. I had to buy milk. I got up this morning and realized that I had forgotten to get milk yesterday so needless to say there were some sorely disappointed cereal eaters in our house, to say nothing of the caffeine addicted coffee drinker who needs that milk for coffee(that’d be me.)
All this to say that some days in this life you are just going to wake up and find that mom forgot to buy milk so you’ll have to eat oatmeal instead. You might even find that she doesn’t have any raisins OR brown sugar to put in the plain organic oatmeal she buys (or maybe she’ll be a nice mom and get the kind with those candy dinosaur eggs in them..but I digress…)
You know, Ramona, what’s cool about the parents you have is that they are really consistent. That means that you know what you can expect from them, they are responsible and they are trustworthy. That doesn’t mean that sometimes they won’t remember to get milk for your Kashi (or Captain Crunch) it just means that no matter WHAT the pantry looks like they will always feed you, always clothe you and always love you and that’s really important.
anyway, just wanted to tell you that…I may be able to stop by on sunday night after I’m done working out in the South Suburbs. I hope so.
have a good night!
Miss Angela
Andy and Jane,
Sara and I wish we could take on some of your pain as our own. We love you and your family and are praying for God’s healing power for Ramona.
Happy 3-months Ramona, we are proud of you!
– John, Sara, Connor, Sam and Jack
Hey guys,
I have been following Ramona’s story from our EC on iVillage… Our little one is a December Snowflake as well. I am so sorry to hear about your news, but know that I will continue to pray for all of you. I do know that miracles do still happen when we pray. May you find peace, comfort, and strength in the Lord at this time.
Leah
Hi,
I found your site tonight and had to write. Three years ago as our son was recovering from open heart surgery we were devastated to learn that he has DiGeorge syndrome too. I’m sure the dr’s told you that it is a wide spectrum, but so far Drew is doing great. I just wanted to give you some hope that things may not be as bad as they seem. Please feel free to email me (a_himmelberger@hotmail.com) if you have any questions or would like to talk to someone who understands. We will keep Ramona in our prayers.
My dear ones,
How my heart breaks for you today and longs to comfort you in some small way. And, yet, yet I remember our God. Who HE is. The same God who brought the two of you together, who brought Simon into your lives, who dreamt of Ramona and brought her to you….this is the same God who will NOT leave you!!!
I can not possibly know all that your heart is going through but I know our God and He will take this seemingly senseless tragedy adn HE will use it for good. Because that is WHO HE is.
I love you very much,
AJackie
I don’t know what to say. This support system is nothing short of miraculous.
I love you all and it pains me to be so far away.
I am praying for a miracle. We send our love to all of you and support,
For those interested in more information about 22q11, a.k.a. DiGeorge here are some excellent websites from the experts on the deletion:
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=74634
http://www.vcfsef.org
Trish
Mom to a 9yo w/22q11
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My son is 2 and a half and also has 22q11.2 Deletion Syndrome. If you ever need to talk, let me know.
My prayers go out for Ramona, Our granddaughter has 22q11 too. She is still in the hospital and it has been nearly 6 months. Over 30 surgeries. God Bless