Zoe Nicholas

07.09.2024 · 14:42:41 ···
01.01.1970 · 01:00:00 ···
24.07.2023 · 06:02:23 ··· 5 ··· ··· 15 ···
07.09.2024 · 14:42:41 ···
01.01.1970 · 01:00:00 ···
24.07.2023 · 06:02:23 ··· 5 ··· ··· 15 ···

1:: Zoe Lain Nicholas - Age 12 - fighting CDKL5 Deficiency Disorder (CDD)

01.01.1970 · 01:00:00 ··· 29.06.2020 · 03:29:27 ··· ···
··· ··· ··· 2020-06-29T03:29:27+00: ··· Made for Zoe Lain on her 12th birthday, with overflowing love and pride, by her dad. Zoe suffers from CDKL5 Deficiency Disorder. This video represents her best moments and milestones from age 10-12. With each of these videos there is always something new and special to see. This time you will see her independent walking is improving as she has begun to navigate some major turns and obstacles. She has also shown improvement with the use of her hands and grip, beginning to guide her own spoon to eat, as well as improved targeting of objects that she is interested in. For those who may not know, CDKL5 deficiency disorder is an extremely rare genetic disorder causing very serious developmental delays, seizures, gastrointestinal issues, and a host of other complications. There are currently no treatments and no cure. If you'd like to support research and hope for a healthier future, please visit http://www.CDKL5.com or http://www.CDKL5UK.org to make a donation in Zoe's name. Music: "Powder Blue / Cascine Park" by Yumi Zouma. Video and images taken on an iPhone 8, iPhone X, and iPhone X Pro from July 2017 - June 2020. Edited using Adobe Premiere Pro 2020. We kindly ask that any/all images shown here are not used without permission. Images: Copyright 2020 to Mark Nicholas.

2:: Zoe Lain Nicholas - Age 9 - fighting CDKL5 disorder

01.01.1970 · 01:00:00 ··· 03.07.2017 · 01:36:05 ··· ···
··· ··· ··· ··· Made for Zoe Lain on her 9th birthday, with overflowing love and pride, by her dad. Zoe suffers from CDKL5 disorder. This video represents her best moments and milestones from age 8-9. With each of these videos there is always something new and special to see. This year it is Zoe's progress with communication and independent walking. She has learned her first sign language sign - for "eat" - and also how to use it appropriately to indicate when she is hungry. You will also see how her independent walking is improving, if only modestly. She is now requiring less assistance with balance as she takes steps. She has also shown improvement with keeping her balance while standing still on her feet, grasping objects, waving "hi", and vocalizing a few words including "hi". (You'll also notice that Zoe is wearing casts in some scenes - she did serial casting this year in order to help her feet and ankles back into an appropriate position.) For those who may not know, CDKL5 disorder is an extremely rare genetic disorder causing very serious developmental delays, seizures, gastrointestinal issues, and a host of other complications. There are currently no treatments and no cure. If you'd like to support research and hope for a healthier future, please visit http://www.CDKL5.com or http://www.CDKL5UK.org to make a donation in Zoe's name. Music: "High On Love" by Class Actress. Video and images taken on an iPhone 6, iPhone 7 and a Canon 7D from July 2016 - June 2017. Edited using Final Cut Pro X. We kindly ask that any/all images shown here are not used without permission. Images: Copyright 2017 to Mark Nicholas.

3:: Zoe Lain Nicholas - Age 8 - fighting CDKL5

01.01.1970 · 01:00:00 ··· 19.07.2016 · 03:34:33 ··· ···
··· ··· ··· ··· Made for Zoe Lain on her 8th birthday, with tremendous love and pride, by her dad. Zoe suffers from CDKL5 disorder. This video represents her best moments and milestones from age 7-8. With each of these videos there is always something new and special to see. This year it is Zoe's tremendous progress with walking. She has gained a much better sense of balance on her feet, and has made huge strides with the various types of coordination necessary to take steps. You will see over the course of the video just how dramatically her walking improved, from heavily assisted, so lightly assisted, and just a couple of months ago, taking her first independent steps (an accomplishment which she is now able to repeat on a daily basis - given time to find her balance before she begins, 4-5 independent steps appears to be a permanent skill in Zoe's skill set.) For those who may not know, CDKL5 disorder is an extremely rare genetic disorder causing very serious developmental delays, seizures, gastrointestinal issues, and a host of other complications. There are currently no treatments and no cure. If you'd like to support research and hope for a healthier future, please visit http://www.CDKL5.com or http://www.CDKL5UK.org to make a donation in Zoe's name. Music: "Shake It Off" by Taylor Swift. (This year also marked the first time Zoe expressed a very clear and strong musical preference, and that preference is for songs from Taylor Swift's album 1989!) Video and images taken on an iPhone 6/6S and a Canon 7D from July 2015 - June 2016. Edited using Final Cut Pro X. We kindly ask that any/all images shown here are not used without permission. Images: Copyright 2016 to Mark Nicholas.

4:: Zoe Lain Nicholas - Age 7 - fighting CDKL5

01.01.1970 · 01:00:00 ··· 28.06.2015 · 05:42:37 ··· ···
··· ··· ··· 2015-06-28T05:42:37+00: ··· Made for Zoe Lain on her 7th birthday, with joy and tears, by her dad. Zoe suffers from CDKL5 disorder. This video represents her best moments and milestones from ages 5-7. With each of these videos there is always something new and special to see. This year it is Zoe's presence. She has gained a much better awareness of her surroundings, visually and otherwise, and now truly enjoys interacting with them however she can - even if her ability to do that is often very limited by the CDKL5 disorder. (A good example: When she sees something she can knock down, she will now find a way to do it - like all of those towers of blocks!) For those who may not know, CDKL5 disorder is an extremely rare genetic disorder causing very serious developmental delays, seizures, gastrointestinal issues, and a host of other complications. There are currently no treatments and no cure. If you'd like to support research and hope for a healthier future, please visit http://www.CDKL5.com or http://www.CDKL5UK.org to make a donation in Zoe's name. Music: "Will You Dance?" by The Bird and the Bee. Video and images taken on an iPhone 5/5S and a Canon 7D from July 2013 - June 2015. Edited using Final Cut Pro X. We kindly ask that any/all images shown here are not used without permission. Images: Copyright 2015 to Mark Nicholas.

5:: Zoe Lain Nicholas - Making A Choice - Milestone Achieved

01.01.1970 · 01:00:00 ··· 17.08.2013 · 01:13:27 ··· ···
··· ··· ··· ··· In this video, thanks to the dedication of her school Speech teacher Karen, Zoe demonstrates her ability to make a basic yes or no decision. This is a major breakthrough for her and is major step in unlocking her strong desire to communicate. It also highlights other new breakthroughs including the ability to move her hands with purpose toward a visual target, and even use her index finger to point. We couldn't be more excited about this achievement! Zoe suffers from an extremely rare condition (1 in 1 million) called a CDKL5 disorder. The condition is genetic, though random (de novo), meaning it is not inherited but just a really bad luck draw in the genetic lottery that occurs for every human. Symptoms include untreatable seizures, severe developmental delay, gastro, constipation and digestive problems, cortical visual impairment, hearing impairment and more. If you'd like to learn more about CDKL5 disorder or make a donation to help develop treatments for Zoe and other children like her, please visit www.cdkl5.com or www.cdkl5uk.org . Filmed at school on August 15, 2013

6:: Zoe Lain Nicholas - Age 5 - fighting CDKL5

01.01.1970 · 01:00:00 ··· 29.06.2013 · 04:41:49 ··· ···
··· ··· ··· ··· Made for Zoe Lain on her 5th birthday, with deepest love, by her dad. CDKL5 may have limited Zoe's skill set, but it has never limited her spirit, her love, or her reach. (CDKL5 is an extremely rare neuro-genetic disorder causing very serious developmental delays, seizures, gastro problems, and a host of other issues. There are currently no treatments and no cure. If you'd like to support research and give sufferers like Zoe hope for a healthy future, please visit CDKL5.com or CDKL5UK.org to learn more or make a donation.) Video and images taken on the iPhone 4/4S and the Canon 7D from July 2012 - June 2013. Edited using Final Cut Pro X. The song was composed just for this video by me (Mark Nicholas, better known as Cosmicity.) It's called "For Zoe". We kindly ask that all images shown here are not used without permission. Images and Music: Copyright 2013 to Mark Nicholas.

7:: Zoe's First Lokomat - Robot Therapy!

01.01.1970 · 01:00:00 ··· 25.09.2012 · 14:40:21 ··· ···
··· ··· ··· ··· This was Zoe's first time doing doing Lokomat therapy - robot assistance with walking. (She just reached the minimum height for the one pediatric robot that exists in the Metro Detroit area.) This will help her develop proper muscle memory, as well as the actual muscles, for walking. The "resistance" will be increased with each subsequent appointment so that Zoe will do more and more of the work as she goes along. She will do this for 45 minutes per session, 3 days per week, for a total of 8 weeks.

8:: Zoe Nicholas - Age 4 - fighting CDKL5

01.01.1970 · 01:00:00 ··· 28.06.2012 · 04:53:20 ··· ···
··· ··· ··· ··· Happy birthday, Zoe!!! This year Zoe has shown HUGE determination to get up on her feet, communicate, and attempt everything that is within her potential to do. And probably above all, she has shown us those beautiful eyes of hers and really started to use them more, which is a very big deal. The truth is in those eyes. She is so much more than CDKL5 tries to conceal, and anyone who takes the time to really look can see it as plain as day. Her other most notable milestone achievements over the past year are listed below, and they are all demonstrated in this video, so please watch for them and cheer along with us as she ACHIEVES!: - Learned to use a sippy cup - Learned to step up from kneeling to standing with assistance - Increased interest in using her hands to grip (green toy that she grabs) - Doing much better at eating solid foods (avocado is shown here) - Increased communication which includes pushing a button to signal a desire for more of something (big yellow button) - Starting to use the sign for "all done" (slashes her arm outward) - Beginning to imitate sound (imitates mom's kiss sound) Happy 4th Birthday, Zoe Lain! We love you so much! Would you like to help? Research is underway that will lead to treatments, and eventually a cure, but it depends on private donations. Any amount helps! Donate here: http://cdkl5.com/Get-Involved/Donate.aspx

9:: Zoe Nicholas - Age 3 - fighting CDKL5

01.01.1970 · 01:00:00 ··· 29.06.2011 · 15:13:11 ··· ···
··· ··· ··· ··· Happy 3rd birthday Zoe! You can help Zoe by sponsoring her at this link: http://www.firstgiving.com/fundraiser/ZoeNicholas/walk-a-thon Zoe was diagnosed last December with CDKL5, an extremely rare and devastating non-hereditary (random) genetic disorder that affects her neurology. It has rendered Zoe cortically blind, still unable to walk or talk, she suffers daily seizures, and has a host of other difficult symptoms. There are currently no treatments and no cure for this disorder. All of that said, this video represents the impressive progress Zoe has made over the last year. We are so proud of her daily optimism and strength. In addition to huge strides with her head control and overall strength, Zoe has learned to sit confidently on her own, kneel up at will, and can even stand up with only minimal assistance. She has also begun to use her eyesight, if only rarely and briefly at this point, so you will see several shots that show her taking a visual glance at the camera. Music: "Proxy" by Cosmicity - used by permission.

10:: Zoe Nicholas - Local news story #2 - Diagnosed with CDKL5

01.01.1970 · 01:00:00 ··· 19.01.2011 · 06:20:26 ··· ···
··· ··· ··· ··· The second of three local news stories about our daughter Zoe. Zoe suffers from an extremely rare genetic disorder called CDKL5. She experiences painful epileptic seizures and infantile spasms, she is cortically blind, has unresponsive hearing, almost no use of her hands, can not eat normal foods, and the list goes on and on. We spent years searching for this diagnosis. Now that we finally have one, we have learned there are currently no treatments and very little research being done for this recently discovered genetic disorder. As you can imagine, we desperately want to help Zoe be all that she can possibly be. If you are moved by her story, please do not hesitate to go to cdkl5 dot com and make a donation to IFCR for research to help us find a cure.

11:: Zoe Nicholas - Local news story #1 - Diagnosed with CDKL5

01.01.1970 · 01:00:00 ··· 17.01.2011 · 23:44:07 ··· ···
··· ··· ··· ··· The first of three local news stories about our daughter Zoe. Zoe suffers from an extremely rare genetic disorder called CDKL5. She suffers from painful epileptic seizures and infantile spasms, she is cortically blind, has unresponsive hearing, almost no use of her hands, can not eat normal foods of any kind, and the list goes on and on. We spent years searching for this diagnosis. Now that we finally have one, we have learned there are currently no treatments and very little research being done for this only recently discovered genetic disorder. As you can imagine, we desperately want to help Zoe be all that she can possibly be. If you are moved by her story, please do not hesitate to go to cdkl5 dot com and make a donation to IFCR for research to help us find a cure.

12:: Zoe Lain Nicholas - Learning to clap 8/23/10

01.01.1970 · 01:00:00 ··· 24.08.2010 · 14:51:34 ··· ···
··· ··· ··· ··· Zoe, now just over two years old, has recently been learning to clap her hands. This is her first new skill involving her hands since her total developmental regression almost 1 year ago now. Zoe has Infantile Spasms, as well as a yet-to-be-diagnosed genetic or metabolic disorder that is causing abnormalities in the white matter of her brain.

13:: Zoe, Push-Up-To-Sit Milestone, July 2010

01.01.1970 · 01:00:00 ··· 23.07.2010 · 03:00:14 ··· ···
··· ··· ··· ··· Just days after her 2nd birthday, Zoe decided to give herself the birthday present of a new heightened view of the world! Share in our joy as you watch Zoe learn to push up to a sitting position for the very first time. She may still be working on her balance, but she's definitely got this getting-off-the-floor thing down.

14:: Zoe Episode 8-28-09

01.01.1970 · 01:00:00 ··· 30.08.2009 · 19:45:06 ··· ···
··· ··· ··· ··· UPDATE: April 2015. Zoe was diagnosed with a disorder called CDKL5 about 6 months after this video was posted. A trademark symptom of this very rare disorder are early seizures (starting before 6 months of age) that are difficult or impossible to detect using normal tests like EEG. Doctors at many famous hospitals failed us. We figured it out on our own and it was then proven by blood test. She is now treated with the Ketogenic Diet which has nearly eliminated seizures of this severity. You can see more current (happier!) videos on her page. ORIGINAL POST from August 2009: Zoe's episodes continue to haunt her, now coming more often than they ever have. The only atypical thing about the one seen here is that it's slightly shorter than most, and instead of burping or throwing up at the end, she cries. Still, this is essentially what we see... about 15 times a day now. Obviously this goes beyond standard Sandifer's Syndrome, GERD, etc. We still don't have a diagnosis for what's really wrong, outside of knowing that she has acid reflux and she's is severely developmentally delayed. These are not seizures. She has had countless EEGs that prove there is not a root cause in her brain. They are almost definitely food or digestion triggered. (Yes, we've seen every type of doctor. We have 2 Gastros, an Allergist, Neurologists, Geneticists, a panel of Autism experts - they say it's not autism - and even a Nutritionist. No one's been able to help her at all in over a year now. Not even a little.)

15:: Zoe Year One

01.01.1970 · 01:00:00 ··· 28.06.2009 · 14:10:39 ··· ···
··· ··· ··· ··· A loving look back at Zoe's first year of life.