Jakey lives in the UK
Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds for vital home adaptations for a disabled child, to continue to care for their child at home, safely and with dignity.
My name is Jakey and I`m 6 years old when I was a tiny baby I had a very serious accident and the hospital could not fix me, My Mummy wasn’t able to look after me so I now live with my forever Mummy and Daddy who love me very much even when I`m cheeky (lots) but I’m not naughty, I have lots of brothers and sisters nieces and nephews, I love it when they come and visit and I get to look after the babies we have lots of And l love meeting new people (especially all the pretty ladies/nurses who I win over with my great big smile) I`m told I have a wicked sense of humour and I laugh a lot sometimes it hurts my tummy but it’s a good hurt. I am lucky to have this amazing computer which is called an Eye Gaze which I use by eye tracking (with my good eye) I love playing games, learning and best of all painting pictures on it, Mummy has had some of paintings made into canvases, calendars and cards, which I sell to raise funds. I have holes in my brain, and because of this I now have Cerebral Palsy to the highest level to all of my limbs (quadriplegic) my wheelchair is my legs as I am unable to move or sit up independently and my head can be a bit floppy, I also have quadriplegic Dystonia which means my limbs are very stiff and hurt lots, I suffer from Seizures, have no sight in my right eye and impaired sight in my left, I am unable to swallow so I`m fed by a tube into my tummy, my breathing wasn’t great and I was given a Tracheostomy 2 1/2 years ago (wow that is a great little tube) I also have severe scoliosis and very very soon Mummy and Daddy will be taking me to the hospital to have magic rods inserted into my back (I must admit I`m a bit scared) but afterwards I should be straighter and not having so much pain, my hips are also dislocated so I will have to have them fixed soon too. Now comes the bit when I ask for some help. Due to all of the above I need to have a bedroom and bathroom on the ground floor I`m getting bigger and heavier to carry upstairs and Daddy isn’t getting any younger (whoops don’t tell him I said that) seriously once I have my operation which should be in Sept/October 2017 I won’t be allowed to be lifted or carried I will have to be hoisted all the time ( Don’t really like hoists). I will be going into a rehabilitation home/Hospice postoperatively because I cant go home (I`m sad ). Thank you for reading my story and if you can help in any way to help get me home I would be forever grateful.
Help bring my newborn “Karma” home
My daughter was born 6/23/17. We knew she had issues but we never anticipated them being as bad as they are. Her brain is SEVERELY malformed and she’s got a condition called “Arnold Chiari malformation” And she has type 3 which is the most severe… she was born with an occipital encephalocele, heart defect, severely malformed brain & many other issues. She is able to breathe on her own but then her brain tells her body that she can’t and she stops. Because of this, we will need to either let her go “comfortably” and take the tube out or get a tracheostomy a G-tube and most likely a ventilator. It’s been so hard getting financial help because I’ve spent every penny I had saved up on good and personal care items. My baby is in the PICU and will be here at least another month and a half. I have to start taking classes and have to be here to learn trach care and if I can’t then she will get placed in a nursing facility that is over 4hrs away and that for me Is just not an option, therefore, it’s crucial I am able to be here with her to learn what I need………..
To read more follow link
Twins need your help
Ezra and Isaiah
Posted here 4th-8-17
The babies had also developed SIUGR where one baby has less share of the placenta making one baby much smaller and also the smaller baby had surgery on the esophagus and will also have to have surgery again in a few weeks. They were born at 28 weeks 4 days due to less movement of the smaller baby! Bills are piling up and since her husband is self-employed he can’t receive any help from the government. Any donations are greatly appreciated. They have at least 2 more months of being in the NICU. Her husband is staying at the hospital to support my sister from recovering c-section! Thanks!
Gage was diagnosed with a very rare cancer
Posted here 19th-6-2017
Gage is the 3-year-old son of Kayla Pearson and Nate Wankerl. On July 1, 2016, Gage was diagnosed with VHR (Very High Risk) Acute Lymphoblastic B-Cell Leukemia. His prescribed course of treatment is 3 years of chemotherapy. In addition to struggling to maintain adequate nutrition due to the side effects of the chemo, he has also suffered severe neurological and cognitive side effects. This causes Gage to act out and display self-harming behaviours. It is the wish of Nate and Kayla to travel to a doctor in Pekin to request access to medical marijuana to assist Gage with these awful side effects! Besides the trials and tribulations of Gage’s health issues, Kayla and Nate have 6 other children, 2 have Autism, 1 with Epilepsy, and one that has Down Syndrome and was born with many medical issues of his own. This is a family is one of the strongest I have met! Kayla is truly a guiding light by keeping everything running, managing appointments and medications. They truly deserve any measure of assistance we can give them.
Campaign created on 29th-5-2017
I would like to introduce our amazing little warrior Tyree Honeycutt. I would like to start a charity fund for him for his medical equipment and other speciality items ex: safe sleep bed, stander, child rite seat for tyree that is unavailable to him through insurance. He cannot get a stander because he just recently got a kidcart 1 year ago and they will not cover a stander which is a requirement due to his previous diagnosis of bilateral coxa valga and the insurance does not cover the bed in his state so he is now just trying to make due with his toddler bed . Mum cannot work due to his complex medical issues and she is the single overseer of his care. Tyree is admitted quite often for major medical issues such as reoccurring gastroenteritis /immobility of the bowel which started in 2015 after major surgery regarding obstruction of his small bowels. Tyree was diagnosed with Dandy Walkers Malformation 20 weeks gestation which causes a number of medical issues such as seizures, lung disease which left him trach /ventilator dependent, visually impaired, cerebral palsy, scoliosis and also bilateral hearing loss just to name a few. Born May 2014 before he was trached he had always had respiratory issues which led to countless hospitalisations so tyree fell behind on numerous of therapy sessions because no one felt comfortable working with him and due to the work of breathing he was doing it always turned into an urgent situation that required immediate professional care.Ty ty (nickname) is also non-verbal and has recently began to roll from side to side but cannot crawl, walk or sit up independently but fights every day to acheive goals. Tyree is also 100% g/j tube dependent due to silent aspiration into the lungs. With the help of others, generosity mum can continue to be able to care for him and give him a better quality of life…
Help Baby Emma-Bell and her parents, Haylie & Wes (26-03-17)
Baby Emma-Bell decided to make a very early debut. Haylie’s placenta ruptured forcing her to have an emergency c-section and Baby Emma-Bell was born 6 weeks early!
Baby Emma-Bell will be in the NICU at Women’s Hospital for several weeks, growing and developing, and getting strong enough to come home.
In the meantime, Mom & Dad, Haylie & Wesley, need to continue to prepare for Baby Emma-Bell to come home, and make sure they travel to and from the hospital daily for bonding visits with Baby Emma-Bell and meetings with her doctors and nurses to make sure she is getting the best care possible and bonding with Mom and Dad, too.
Please donate what you can. Even $1 helps!
Benjamin Born with EA-TEF (19-03-2017)
Some children with EA, also have a genetic component such as trisomies 13, 18, or 21(Down Syndrome)as in Ben’s case, he has T18. EA or TEF can also be a piece of the VACTERL syndrome which is a group of defects that are found together in the same baby. VACTERL stands for Vertebral defects, Anal atresia, Cardiac defects, Tracheo-esophageal fistula, Renal anomalies, and Limb abnormalities. In Ben’s case, he also has a minor congenital heart defect and his right hand has some minor abnormalities.
CHARGE syndrome can also apply to babies born with Esophageal Atresia. CHARGE stands for Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and development, and Ear abnormalities and deafness. As I mentioned, Ben has minor heart defects as well as retardation of growth and development and outer ear abnormalities. I’m not positive yet which syndrome applies to him as they seem to overlap. This will be determined by more testing later on.
I have known the Family of this child called, Benjamin, his surgeon was unable to get the ends of his oesophagus together so he gave him a spit fistula and will perform the Kimura method of external traction on him in several procedures starting in June at Lucille Packard Children’s Hospital at Stanford University in California.
For more on this you can read it here.
Heart Op Needed (11-3-17)
Please share. This campaign is for us to be able to raise funds so I can complete the amount I need for baby gab’s open heart surgery. The go fund me, the link. https://gogetfunding.com/my-little-heart-warrior-gabriel/