Helping Luella's Family

My name is Rachael and after much debate and discussion I am opening this Go Fund Me to help raise money for the family of Luella.

 

Erin and Dave were a happy carefree couple living a 'normal' life. Newly married and looking to create a family.

 

In 2019, their beautiful daughter Luella was born making them parents, giving them so much joy. However, at just 11 weeks of age Luella was diagnosed with with a very rare and catastrophic form of epilepsy called Infantile Spasms/West Syndrome.

 

For the past two years Erin and Dave have watched their sweet little girl struggle to develop as she fights the electrical storms in her head. They watched the future they envisioned for her fade away.

 

Having just turned two, she has global developmental delay where she cannot walk, independently stand, properly crawl or independently feed herself, and is non verbal. It has been nothing short of a horrific journey. They have tried every possible combination of medications and so far they have been unable to obtain seizure control or freedom.

 

Fighting through so much fear they took the brave and beautiful plunge to add to their family, announcing recently that they are pregnant with Luella's sibling.

 

For the last few weeks they finally felt some joy, a breath of hope for the future and someone else to love and play with Luella. Sadly that feeling was short lived.

 

Luella is now having a more severe form of seizures (focal seizure) as well as spasms. The future for Luella is so uncertain but Erin and Dave will continue to fight for her.

 

Erin cannot work as she has to be Luella's fulltime carer. I have wanted to find ways to help them for a while but they have always refused help. And I understand why I felt the same when my own daughter was sick. It is hard to accept help from people especially when you know there are people worse off then you. But there will always be people better off and worse off, that doesn't change the need for help. The time has now come for Erin and Dave to get a little assistance.

 

Now that Erin is pregnant it will soon become impossible for her to carry Luella, to rock her to sleep, to bath her. She will need some help while Dave is working.

 

In addition, the only 'treatment' left for Luella is brain surgery which would seperate the left and right hemisphere of Luella's brain. If/when this surgery occurs there is no telling the costs, results or the care Luella, Dave and Erin will need. The fear they must feel when thinking of this surgery would be so intense. More than many of us can imagine.

 

I have decided that I would start a Go Fund Me as I know many of Luella's community wish to help her but are unsure how. Anyone who wants to help can but no-one should feel any pressure if they are not in the position to.

 

In my eyes the aim is to raise enough money for them to be able to hire a nurse who can help them in the times they need. Someone who understands Luella's needs and how to handle the medications and seizures or for them to use the extra money in a way they can help them in the road ahead.

 

Please feel free to share this Go Fund Me.

 

Much love,

 

Rachael xx