Help Makiyla-Rose With All Equipment She Deserves
£520 raised
26 contributors
4 Years running
A Lot Of You May Know Makiyla-Rose But For Those Of You That Dont... She Is Our Daughter Aged 18 Months. Makiyla-Rose Has Very Complex Medical Conditions, That So Far Doctors Are Unable To Diagnose.  We Had A Few Problems During The ...

 A Lot Of You May Know Makiyla-Rose But For Those Of You That Dont... She Is Our Beautiful Daughter. Makiyla-Rose Has Very Complex Medical Conditions, That So Far Doctors Are Unable To Diagnose.

We Had A Few Problems During The Pregnancy, Her First Scan Showed High Levels Of Fluid On The Back Of Our Babies Neck And That She Was High Risk Of Down Syndrome. We Had A CVS Test And All Came Back Clear. We Had A Private 4D Scan Which Showed Her Bowels To Be Enlarged So We Had To Have Weekly Scans To Keep An Eye On This, Nothing Changed And We Were Told All Was Ok.

After A Difficult Birth, Makiyla-Rose Was Taken Into The Neonatal Unit As She Was Quite Cold, She Stayed There For Only A Few Hours. We Were Told By A Doctor There That Makiyla-Rose Had Uncommon Facial Features. Makiyla-Rose Was Sent Home From Hospital A Few Days Later As Normal. We Noticed Makiyla-Rose Was Not Meeting The Normal Developmental Stages That She Should Have Been Reaching. She Was Unable To Fix And Follow On Anything Or Hold Her Head As Would Be Expected. We Went Back To The Hospital To See Her Consultant And Raised Our Concerns... That Was Just The Start!! Makiyla-Rose Has No Muscle Tone, Leaving Her To Be Like A New Born Baby With No Head Control And Unable To Sit Etc.Makiyla-Rose Cannot See Objects Or People, Only Light. That At The Time Broke Our Hearts,Our Baby Girl Couldn't See What Her Mummy, Daddy And Big Sister Looked Like. Little Did We Know What More Was To Come.She Also Has Epilepsy, She Wasn't Born With This She Developed It Around 9 Months Old. Her Seizures Cause Her To Stop Breathing And Her Lips Turning Blue. She Used To Do This Up To 12 Times A Day, A Very Difficult Thing For Any Parent To Witness Happen To Their Child, With Nothing We Can Do To Help. With A Few Trial And Error Medications, Makiyla-Rose Now Has Fewer Seizures Than Before, Usually A Few A Week Now. She Has Kidney Problems, One Is Smaller Than The Other And She Refluxs Also, She Is On A Permanent Antibiotic To Prevent Any Water Infections. She Is Now Mic-key Fed As She Stopped Drinking Her Bottles Causing Significant Weight Loss. She Cannot Take Any Fluids Or Medicine By Mouth.In January An Xray Showed That She Has An Unsafe Swallow, Meaning That She Could No Longer Eat Either (Nil By Mouth) Another Devastating Blow To Us, One Day We Could Give Her Food, The Next We Couldn't.For Over A Year We Fed Her, So Adapting To Not Being Able To Is Heart Breaking. Makiyla-Rose Is On Home Oxygen 24/7 As She Refluxs Her Milk Which Causes Her To Have Repeated Chest Infections. Our Special Little Girl Despite All Her Problems Continues To Smile Through It All. When She Smiles We Know That Everything Is Ok And Makes Our Lives Worth While. The Hardest Part For Us As Parents Is Not Knowing What The Future Holds For Makiyla-Rose. We Know Thousands Of Children Are Born Each Year That Doctors Are Unable To Diagnose, We Want Them To Know They Are Not Alone And We Understand How Hard Life Can Be At Times. 

Our Special Little Girl Despite All Her Problems Continues To Smile Through It All. When She Smiles We Know That Everything Is Ok And Makes Our Lives Worth While.

The Equipment That Makiyla-Rose Needs And Deserves Comes At A Great Cost With Very Little Fudning Available. She Needs Sensory Toys As Her Sight Is Stimulated By Light Only, And Different Textures For Her To Explore. 

We Are Hopefully Moving House Soon To A Bigger House So That Makiyla-Rose Can Have A Room Of Her Own, So She Can Have The Equipment She Needs (Bed, Shower Room Etc) We Hope That With Everyones Help And Support We Are Going To Be Able To Raise Enough To Turn Her Bedroom Into A Sensory Room For Her :) 

Please Dig Deep And Help Us  Please Give Our Beautiful Daughter The Best Equipment She Needs And Deserves To Make Her Very Limited Senses Work To The Best Of Her Ability. Every Little Helps :)

Our Little Angel Always Smiles Through It All

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