KHYLEE MARIE HOLDEN, 1-month-old daughter of Chantell and Bryan Holden of Dallas, died Friday. Funeral, 3 p.m. today, Benson Funeral Home.
Published in The Atlanta Journal-Constitution on 10/8/2006.

Funeral Services for Little Miss Khylee Marie Holden, age 1 month, 23 days, will be held on Sunday October 8, 2006 at 3:00 at Benson Funeral Home with Rev. Thomas Cole and Rev. Marcus Fielder officiating. Miss Holden's family will be receiving friends on Saturday from 4:00-8:00 PM. Miss Holden is survived by: Parents, Mr. and Mrs. Bryan (Chantell) Holden; Brothers, Mr. Cameron Holden and Mr. Cayden Holden; Grandmother, Mrs. Melinda Shead Holden; Grandparents, Mr. and Mrs. Ken (Vanessa) Strickland, Mr. and Mrs. Ronnie (Kathy) Rees; Great Grandparents, Mr. and Mrs. Herman (Mildred) Holden, Mr. and Mrs. James (Louise)Shead, Mr. and Mrs. Charles T. Ready, Jr. and Mrs. Annie Hanson; Aunts, Uncles and Cousins. Little Miss Khylee Holden was preceded in death by; grandfather, Mr. Larry Holden; Aunt, Miss Jennifer Lynch.

I found out about this beautiful little girl from a coworker of mine. All of this is very heartbreaking to me. Khylee does not deserve this, nor do her parents. I have included the pages from Khylee's Care Page ....... please keep this family in your thoughts and prayers!



October 16, 2006 at 04:31 PM EDT
Just wanted to say thank you so much for all your prayers. Times are really hard right now, and the holidays will be a struggle. Please continue to pray for our family. chantell


October 07, 2006 at 12:08 AM EDT
Khylee passed away today at 2:28PM. I wanted to say thank you so much for all your thoughts and prayers. Please continue to pray for our family during this difficult time. This has brought us all so close, Khylee left her daddy's arms, straight into the presence of the Lord. When she took her last breath of life, she smiled so big and was moving her head from side to side. I can only imgine what she saw! I can only imagine PaPa with Khylee right now. When Larry passed, I kept saying " I wish larry could see her" Not knowing that he would get to spend more time with her than us! It wont be long, I will be there with her!

Everyone is welcome to Khylee's funeral. She has touched so many!
Saturday Oct. 7 4:30P-8:00P Viewing
Sunday Oct. 8 3:00P Funeral

Chantell forgot to put that it was going to be at Benson Funeral Home in Dallas. Their obituary phone line is 770-445-7111 if you need it. Their main line is 770-445-9494. May God bless each of you!!! Aunt Angela Psa. 27:1


October 05, 2006 at 11:23 AM EDT
Well, we have not updated the page in a few days, because I really just didnt know what to say. On Tuesday at 3 we met with the doctors, and we didnt get very good news. All of the CSF (cerebal spinal Fluid) test came back with no answers, they were the last test that could have been done on Khylee. The MRI that was done on last Friday was a lot worse. The Myelination that is covering over 50% of her brain is not going away, and now she has "atrophy" of the brain. Atrophy is loss of the nerves and tissue of the brain. It shows her brain shrinking. This is caused by the 100's of seizures she is still having everyday. She is not really waking up anymore, and when she does it is only for a few seconds, she seems to be in a deep stare with not a lot of eye movement. The doctors told us in that meeting that Khylee had a very poor outcome. That her quality of life would be very poor as well. They said, if things continued she would start to suffer and be in pain, and that the seizures would eventually take over and take her life in a short time. With that, they suggested to keep her from suffering that we consider taking her off life support at this time. After tons of tears and pain, and prayer we have lifted her up to God, we feel that at this time the best thing to do is let her go. Family will all be in town today, and probably tomorrow she will be lifted from life support. God still can create a miracle within Khylee... We are holding on to our last thread of hope.


October 02, 2006 at 01:16 PM EDT
Khylee's night went well last night. While at the hospital I gave her a bath, and changed out her trach. It's really hard doing that, because she looks so umcomfortable while changing it. She opened her eyes for a split second during her bath. But, before that it has been since last Thursday that she woke up. A lot of you are asking about the Community Trust fund that misty set up for Khylee. You can go to any Community Trust bank and on the deposit slip just write
*Misty Cole for baby Khylee Holden.
For those of you who live out of town and are asking how to help you can make a check out to Khylee Holden send it to

Communtiy Trust Bank
276 Merchants Drive.
Dallas Ga, 30157
Make sure to write Attn: Misty Cole On the envelope.

Again, I will update today as soon as I hear from the doctors, and I thank you so much for all your thoughts and Prayers........

October 01, 2006 at 11:03 PM EDT
Tonight is a difficult time for us all. Khylee has been visited throughout the day by the family. She had another episode last night where her stats dropped. Nurses worked again to get her back stable. Today she looks swollen in the face. If you touched her, it made her uncomfortable. She seems to be having numerous seizures and other problems. MRI results are not what we wanted to hear, but sort of knew was happening. Khylee's brain is not well. There is nothing more the doctors know to do. We all went to church this morning. Pumpkinvine church members all gathered around Chantell, Bryan, Melinda and I to pray. I promise you Khylee has touched many hearts. There was not a dry eye in the building. We are strong and still faithful a miracle could happen. Yet we know Khylee is probably in her last few days if even minutes. Please keep us in your prayers. Especially Chantell and Bryan. I wish I had good news...and its so difficult to even write. I know so many depend on this to keep in touch. I pray Khylee sleeps peacefully tonight. Khylee's MeMaw


September 30, 2006 at 10:49 PM EDT
Khylee looked so peaceful today. The doctors made a decision to not put the EEG back on to monitor the seizures. Nurses worked for 30 minutes washing her hair to get all the gel out. She has pretty long golden brown hair. I will post a picture of her today. The doctors's nurse spoke to us briefly about the MRI. The doctor will have to speak to Bryan and Chantell about the complete results. What I understood was some brain tissue was going away. They see some fluid also. Chantell asked to hold Khylee for a while. Its hard to get her positioned correctly so she gets air through the trach. She started coughing and gagging some. Stats going up and down. Finally had her comfortable for a few quiet moments. Ken and I decided to give them private time alone with her. We went to the waiting room. Then things went wrong, her stats dropped very low. All staff was called over quickly and they began to work on her. Chantell came out to waiting room crying. She thought we would lose her from what they had to do. This has to be the hardest day yet. Bryan came out and said she was fine and stable. Its so emotional and I wish I could make it all better. We all went back to see her. Nurses had her all comfortable and sleeping again. Chantell encourages the family to visit Khylee within the next couple days. Thank you for all the support. Chantell and I talk about how so many people are praying and helping us. Khylee needs a miracle to be healthy. She is a fighter and trying her best each day. I am thankful each day she is with us. Khylee's Memaw


September 29, 2006 at 12:45 PM EDT
Khylee has so many new orders today. She has three pages of info in her chart for just yesterday so I will update you the best I can. She was put back on the EEG yesterday to monitor her seizures, she is still having a lot, but the doctor didnt tell me exactly how many. Some hours more than others. He split her medication up a little so that it would not wear off as quickly. We noticed while she was on the twelve hour doses in about 6 hours her seizures started back really bad, so now she gets it every six hours. Here is what she is taking for seizures: Ativan, Keppa, Phenobarbatol, Vitamin B6, and Topamax. She is still on an antibiotic for her infection, it is clearing very well, just not gone yet! Dr. Fernhoff the genetics doctor, has told us that he feels Khylee has been having seizures since she was developed early in my pregnancy. In his best medical opinion he thinks Khylee has permanent brain damage from the seizures, and will have a hard life. Are hope right now is very slim. They have only a few more things that they can try, These are being done this weekend. Yesterday all her documents were sent to CHOP(childrens heathcare of pittsburg) The doctors there have some studies that they want to do on Khylee's spinal fluid. These are test that we just found out about and that scottish rite is not able to do. Dr. Philbrook the nuro, did not know these test were available, so he sent the info to them. They are Myelin studies. We are on a big roller coaster this week, and I dont know what will happen. Dr. Hamre her MD said that it would probably be best to tell the family if they want to come and see Khylee, right now would be a good time. We will know for sure to tell the family if they need to come when the MRI is complete today. We will get the results tomorrow.

I just wanted to tell you all that I love you very much. I am so thankful that I have so many people standing by my side. But, even with that this whole time I have kept it together. Yesterday, when Dr. Hamre told me that right now we might need to tell family to come see her, and that it is not the end, but we are very close to it right now- I lost it. I thank God that michelle was with me, because i could not keep it together with cameron and cayden. melinda came and got them and they are still with her today. After a night at the hospital and lots of prayer on my part- I have peace and i am going to be okay. I am going to visit her and then out to Danita's to get the boys. I feel awful like I cant keep up my "mommy duties", and I dont know why. But, Im going to! It has been too hard on me trying to deal with Khylee, Cameron and Cayden- Keep the house clean and also do the business billing and my paperwork is to the sky! I had some quite time today to get some of my thinking back in order and I am going to be fine- I Just want to ask you for your prayers. Please pray for bryan too as he is trying to manage the time with working, family and getting to atlanta to see khylee too. Everything we have taken day by day, and for some reason this week has kinda been crazy. I love you and thankyou for everything! Love chantell


September 28, 2006 at 09:50 PM EDT
Khylee received a night off the EEG. She was put back on the monitor today. Chantell has not told me how many seizures recently. They did a spinal tap today and sent it to an Ohio Speciality Seizure Hospital. Doctors in Ohio are now looking at Khylee's records and the fluid. She will have another MRI tomorrow to compare with recent scans. Please continue to pray for Khylee, Chantell and Bryan.


September 27, 2006 at 05:47 PM EDT
Khylee looked better on Tuesday night. The swelling has pretty much gone away in her face. She is on a continuous EEG with camera monitor. The medications have been changed for the seizures and Dilantan was weined off and stopped. Her seizures are still at about 5 an hour. Staph infection has not grown in size and under control. She was so pretty without all the tubes. However, feeds are back through her nose. A small tube in mouth to stomach is to pull out bile. With trach you need to keep her from reflux of any fluids. She weights 7lbs 4oz. Chantell said doctor woke her up. Put a light in her eyes and she followed it back and forth. Last night she was moving her legs and arms a little. Nurse said Monday night she was not a good girl. Pulled her trach vent hose off three times. Setting off alarms and making them all run to her. She does have some strength when she wants. Chantell and Bryan are wonderful with her. Their faith is solid and very hopeful for the best outcome. Thank everyone for the prayers. We are amazed at the support from all over. Khylee's MeMaw....


September 24, 2006 at 08:52 PM EDT
We just got back from visiting the hospital, Khylee looked a lot better today after they started the diretic (lasix). This is to take her swelling down from the medication and surgury. She opened her eyes today for the first time, but didnt seem to try to focus on anything. Her infection was a little better today, however they found out it is staph... She has tracheitis (sp?). They started her feeds back up today as well at 5cc per hour and will continue to increase as tolerated. She is continuing to have 5 or more seizures an hour. She has been taken off the sedative so now she should start to wake a little more. The VEEG is still in progress to monitor her seizures. Thanks so much for the continued prayers!
Love chantell


September 23, 2006 at 08:17 PM EDT
Okay! I finally have a second to start her page! After long hours at the hospital and long talks this week with the doctors, we have learned a lot more about her. What we do know is Khlee has Hypermyelination on her brain. This is too much myelin around the nerves in the back side of her brain. It is covering almost 50% of her brain. Hypermyelination is usually only seen in babies that have been diagnosed with a metabolic or genetic disorders. All of Khylee's test have come back negative for the two. THey have never seen a completly normal baby with hypermyelination. The other problem that Khylee has is seizures. Her seizures are pretty severe. As of today she is having about 5 or more an hour and, despite the high levels of medication to control them they still remain uncontrollable. The nuro team is worried about possible brain damage because of the seizures and not being able to stop them. This week she will have another MRI Scan to see how her brain has changed, or if it has changed. What is wrong with Khylee is not something the doctors can fix. Myelin is not somthing that can be taken off the brain by surgury. God is in complete control, and she is in his hands. I pray so hard that when her MRI comes back next week that the Myelin will have somewhat decreased. The nuro doctor told me that they are doing all they can right now, and she is still not responsive to the drugs. They are trying to figure out if the myelin on her brain is causing the seizures or if they are causing the myelin... He said Khylee is not an easy case, They have seen Hypermyelination before, however not this severe of a case where it is holding so much of the brain. Please just continue to pray. It has been somewhat promising until these last few days. It gets really hard to go to the hospital and see my little girl laying there so helpless. She has a gram negative infection as well. THis is in her trachia, where she has the tracheostomy. They have started antibiotics for this and hope it to start clearing quickly. It is a hard infection to get rid of. So, please pray for that as well, we are praying she doesnt get pnumonia. Pray, Pray, Pray, is all we need.... Thank you so much for everything! Love chantell

A HUGE THANK YOU TO SWEET SUE FOR SPONSORING LITTLE KHYLEE'S PAGE !!!