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Welcome to Riley's web page!

Thank you for coming to see Riley's web page. We started this web page to keep friends and family updated on Riley's journey. Riley was an amazing little girl who touched so many people and on March 25th, 2011 earned her Angel Wings and her seat next to God. I will continue to keep this page up and available to all~ and am comitted to carrying on her memory and I am going to do everything I can to help others. I am not sure where or what my "calling" is going to be. I have faith that Riley will steer me in the right direction. Please take time to read through the journals and look at the pictures and please post in her guest book, reading them is what has helped us get through- not only through the ups and downs of the past 6 years but especially the past few days. Although our hearts will NEVER be whole again, your messages, emails, calls, and hugs have help start the process of healing our hearts.

Thank you so much, for sharing in the life of our precious angel, Riley.

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At 7 days old, Riley was first diagnosed with AICARDI SYNDROME.

Aicardi syndrome is a rare genetic disorder identified by the French Neurologist, Dr. Jean Aicardi in 1965. This syndrome is defined as a rare disorder. The number of identified cases of children with Aicardi syndrome is very difficult to calculate accurately, but has been estimated at 300 - 500 worldwide.

Aicardi syndrome is characterized by the following "markers":

Absence of the corpus callosum, either partial or complete (the corpus callosum is the part of the brain which sits between the right and left sides of the brain and allows the right side to communicate with the left.)

Infantile spasms (a form of seizures)

Lesions or "lacunae" of the retina of the eye that are very specific to this disorder

Other types of defects of the brain such as microcephaly, (small brain); enlarged ventricles; or porencephalic cysts (a gap in the brain where there should be healthy brain tissue)

Aicardi syndrome only affects females, and in very rare cases, males with Klinefelter syndrome (XXY). It is theorized to result from a defect on an x-chromosome.

Children are most commonly identified with Aicardi Syndrome between the ages of three and five months. A significant number of these girls are products of normal births and seem to be developing normally until around the age of three months, when they begin to have infantile spasms. The onset of infantile spasms at this age is due to closure of the final neural synapses in the brain, a stage of normal brain development.

Treatment of Aicardi syndrome primarily involves management of seizures and early/continuing intervention programs for developmental delays. Prognosis for these children varies, though all experience developmental delays, typically moderate to severe mental retardation. Published medical information in professional journals is somewhat limited and these articles are written by and for specialists. A limited bibliography of these journal articles can be found in this web site. Genetic research is ongoing into the cause of this disorder and the Aicardi Syndrome Foundation and newsletter member families continue to be active participants in several research projects.

The above information was copied from the Aicardi Syndrome Foundation Web Page.


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Researchers at Baylor have published one of the papers resulting from the information they gathered from many families at the 2004 conference. This is the article about common facial features in Aicardi syndrome.

Facial and physical features of Aicardi syndrome: infants to teenagers.

Aicardi syndrome is a sporadic disorder that affects primarily females and is hypothesized to be caused by heterozygous mutations in an X-linked gene. Its main features include of a triad of infantile spasms, agenesis of the corpus callosum, and distinctive chorioretinal lacunae. Additional common findings include moderate to profound mental retardation, gray matter heterotopia, gyral anomalies, and vertebral and rib defects. To date, no consistent facial dysmorphisms have been described. We examined 40 girls with Aicardi syndrome and determined that consistent facial features appeared in over half the study participants and included a prominent premaxilla, upturned nasal tip, decreased angle of the nasal bridge, and sparse lateral eyebrows. Externally apparent microphthalmia was seen in 10/40 (25%). Various skin lesions (including multiple nevi, skin tags, hemangiomas, one giant melanotic nevus, and a history of a previously removed angiosarcoma) were present in 8/40 (20%). Hand abnormalities were seen in 3/40 (7.5%) and included camptodactyly, proximal placement of the thumb and hypoplasia of the fifth finger. This study clearly delineates the existence of a distinctive facial phenotype of Aicardi syndrome not previously described. We recommend that features of a prominent premaxilla with upturned nasal tip and vascular malformations/vascular tumors be added to the modified diagnostic criteria in order to improve the ability of geneticists to diagnose Aicardi syndrome.

Sutton VR, Hopkins BJ, Eble TN, Gambhir N, Lewis RA, Van den Veyver IB.

Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas, USA.

PMID: 16158440 [PubMed - in process]


Riley Nicolle Spaulding

Born: December 20th, 2004

Weight: 8 lbs. 11 oz. Length: 21.3 inches

Lilypie Kids Birthday tickers

Journal

Wednesday, May 30, 2012 2:01 PM CDT

So I was on the AicardiSyndrome.org website trying to decide if I would be up to going to the Aicardi Conference that is held every other year for all the Aicardi families and I went to "Meet Some of Us" and saw Riley's name and they had a link that brought me to her Caringbridge page. I didn't realized that it had been so long since I had last updated- So I wanted to jump on here and give a quick update for anyone who stops by... not sure if anyone does anymore, but just in case...

The first year after Riley passed feels like a big blur. The first 6 months were so odd- like i was still in shock. Everything was new, but not in a good way- everything was new and lonely. I spent so much of my time on the couch at home diving into movies and just being alone at home.

I would often think of all the times that I had heard someone say "Each day will get a little easier" and I would almost laugh under my breath. All I could think was that NOTHING would be easier ever again. NOTHING. There were times when it was hard to breath, let alone do anything that was supposed to feel better. 6 months after Riley passed, the world crashed in around me. I remember that I started to journal- and the only reason that I started it in the beginning was because I held onto the hope that some day I would be able to look back and see how far I had come from this horrible deep depression and saddness... but deep down, I thought that it was just wishful thinking and that it would never actually happen that way.

I did get involved with a Grief Group through my church and the first time I went, the movie we watched was all about losing a child. Perfect, right? No- actually, most of the movie was about how to grieve with your spouse and your other children and I left there more sad and depressed than when I got there.

March 25th, 2012 was the one year anniversary of Riley's passing. Since her passing, my family, friends and I have done our best to remember Riley and to do things that honor her life.

On Arbor day, 2011, Tess (Riley's PCA) and I went to Riley's School and along with 4 other families who had lost a child, planted a tree in honor of each of our children who had at one time attended the Pine Bend Special Ed Classroom. I met another amazing family who had lost their daughter only weeks prior to me losing Riley - it was comforting to talk to them and share stories.

In August 2011, for the 7th year in a row, we participated in the Stroll for Epilepsy in Duluth and this year, they asked us to lead the stroll in Riley's honor! We carried a huge bouquet of balloons and lead everyone for the Stroll down by Lake Superior- It was so wonderful to share Riley's story and then to be honor by leading! It was so special!

The week before Thanksgiving 2011, I once again, returned to the University of MN, to speak to the First Year Med students about Riley, our experience with doctors, nurses, etc, and just about our lives. I think that this was my 5th year doing this... One of Riley's doctors teaches a Genetics class that every single 1st year med student has to take and so we figured that over the years, I have spoken to somewhere around 1200-1500 students and future doctors about Riley, Aicardi Syndrome, and how they can make a difference in someone's world by how they treat the "patient" and the "patients family" not just by their medical knowledge. Maybe someday a little girl will be diagnosed quicker because someone will remember me talking about Riley, the markers for Aicardi Syndrome...or just some thing that I said will change what kind of doctor they become.

I made it through my first Thanksgiving, Christmas, Riley's birthday, and New Years with out her. It was difficult but it was also very comforting to be with my mom, dad, Hayley, Jerry, and Blake and Kendall.

For what would have been Riley's 7th birthday, December 20th 2011, We celebrated by bringing big baskets of goodies to the families in the NICU where Riley was born at the U of MN West Bank campus and then for Christmas I brought stuffed animals to the kiddos in the PICU at Children's Hospital and four large baskets of breakfast goodies to the families. Going up there was weird because they have build a new PICU wing and it is no longer in the same building as it was when Riley was there so it felt so off until I walked in and saw the nurses that had become such a big part of my life over the past two years.

My mom and I drove down to Kiester, MN in April 2012 to attend the Bowling for Aicardi Syndrome fund raiser that was put on by another Aicardi Family. It was so amazing seeing people gather to celebrate all the amazing Aicardi kids and Angels!

Just this past month, May 2012, I was a guest on the radio 96.3 KTWIN to talk about Riley and how the organization Spare Key, helped us so much during the darkest times. This i an amazing organization and I encourage everyone to go to www.sparekey.org and donate $10. You will directly help other Minnesota families who have critically ill or injured children- your donations to toward making a mortgage payment for these families so that they can spend more time with their child and less worried about this mortgage payment/losing their house.

Spare Key has asked me to help get team of families together to spread the word about Spare Key!! I am so honored and can't wait to get started!!!!

On June 28th we are going to be golfing at the 96.3 KTWIN/Spare Key Golfing Fundraiser! Please go to www.sparekey.org or to 96.3 KTWIN's web site to register! Would love to see you there with us!

Well, the past few months I have felt "lighter" than I have in years. I will never be completely "whole" again with out Riley here with me, and I have to say that I will NEVER do anything in this world that I will be more proud of than being her mom and I will live each day in honor of her until that amazing day comes that I am reunited with her in Heaven.

Thank you all for all of your love and support through the past many years and especially the past year and a half. I could not have made it through so much with out your love!

I will try to keep this updated every so often so that you can read what I have been up to and how we continuing to share Riley's story with the world!

With love,
Nikki
Riley's Proud Mom, Forever and Ever
(12/20/2004-03/25/2011)



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Hospital Information:

Patient Room: PICU

Children's Hospital- St. Paul
345 North Smith Ave.
St. Paul, MN 55102
Attn: Riley Spaulding

Links:

http://www.firstgiving.com/teamriley   STROLL FOR EPILEPSY 2010 DONATE HERE!!!
http://www.aicardisyndrome.org   Aicardi Syndrome web page for friends and family!
http://quiltsoflove.com/quilt_2005/riley-ns/riley-ns.html   Riley's Quilt of Love


 
 

E-mail Author: rileysproudmom@gmail.com

 
 

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