Kallie's SDR Journey

Hi my name is Sue also known as mama to a very special little girl.

Our beautiful daughter Kallie is 6years old. Kallie was born at 37weeks with many complexed needs.

Kallie was born with a condition called Semilobar Holoprosencephaly which is an abnormality of the brain, Holoprosencephaly results in the brain not properly seperating into the right & left hemispheres, Kallie was also diagnosed with a genetic condition called Hartsfield Syndrome, Hartsfield Syndrome is rare condition characterized by Holoprosencephaly.

She was also Diagnosed with a rare form of Diabetes called Diabetes Insipidus along with Cerebral Palsy.

Shortly after Kallie's birth we as a family was sat down & told babies born with Holoprosencephaly never usually make it out the womb alive & if they did they almost never make it past 6-12months of life.Our world as we knew it fell apart.

We were told Kallie would never see, smile , walk, talk or have any motor skills what so ever,

she was tube fed for the first 3 years of her life( it has since been removed) she struggled with her Diabetes ( which she has since outgrown) numerous times we've been told stop trying ,give up ...but we don't do giving up in our house we pushed through.

So here we are 6years later , kallie has not had an easy ride she has fought daily to be where she is today over coming obstacle after obstacle and she does it all with the biggest smile on her face. We've put Kallie through her paces everyday with physio therapy nhs & privately self funded but its just not enough Due to Kallie's Cerebral Palsy she the majority of the time gets quite stiff with spasticity resulting in making all aspects of her care's difficult i.e nappy changes, hoisting, dressing etc it also cause's difficulty sleeping and is quite painful in general this means at times Kallie is unable to access various pieces of her equipment like her standing frame, certain seating, or she is unable to do things she's once done before as her muscles become just to tight.

On the 18th Dec 2023 Kallie had her first ever round of Botulinum Toxin(Botox) injections in her legs at Alder Hey Childrens Hospital in the hopes this would ease Kallie's pain , help her sleep & more importantly get her back using her equipment .Botox for Kallie worked amazingly well it did ease her pain, she was no longer screaming with the pain from accessing her equipment/doing her physio, she slept much better and it also gave Kallie some independence as all's she wanted to do was play on her sensory mats & try her absolute best to crawl, we were thrilled ,her physio & the neurology team were delighted with her results too. Botox however doesn't last forever & Kallie's started to wear off around march 2024 so she was re listed for a 2nd round.

Kallie has just got through her 2nd round she's currently 10days post Botox & back to loving life playing on the floor trying her absolute best in everything she does, her daily routines are becoming slightly more easier as her muscles are no-where near as tight as they were.

Unfortunatley again this wont last forever & Botox can't be given permanently as over time it will eventually weaken Kallie's muscles . So what are our options...

Selective Dorsal Rhizotomy(SDR)

SDR is a surgical procedure to permanently reduce the spasticity (muscle tightness) in children with Cerebral Palsy. SDR involves cutting the nerve rootlets in Kallie's lower spinal cord that are causing her muscle tightness in her legs ,by cutting the nerve rootlets causing spasticity it will decrease muscle stiffness without affecting other functions. When spasticity is relieved underlying muscle groups can start working more normally & improve a childs mobility & function.

So we had an appointment on April 9th 2024 with the neuro surgeon at Alder Hey to discuss Kallie having SDR.

Kallie has significant brain damage & we'd been warned she wasn't the typical candidate for SDR so i went into the meeting with little hope preparing to put up a fight for our little girl. We'd do anything in the entire world to get her this operation , SDR is lifechanging it eases the pain , makes life more comfortable & gives children the chance of more mobility , more independence. All we have ever wanted is to see our girl walk ,to give her the chance of some independence she is so desperately fighting her body for, to maybe one day walk her into school holding her hand instead of her wheelchair.

The meeting went above & beyond my expectations

Kallie's brain damage is severe but it's not progressive and because she'd had such wonderful results from her Botox it was agreed the only way forward they could in fact see for Kallie was SDR but.... the big BUT.....we have to self fund it.

SDR at the moment costs just under £20,000 pound. Once Kallie has had the operation she will have intense physiotherapy daily for 12-18 months to build up all her muscles.

Kallie has now been added to the waiting list for SDR ,The waiting list currently stands at around 12months .

We have 12 months to raise £20,000 to give our little girl the chance of a lifetime , a life she deserves , a more comfortable life .

Any donation would be greatfully recieved in helping us to help Kallie

Thank you♥️